Cameron has placed a ‘Botox’ alert on Google that shows him all the recent discussions that are happening on the internet. This led him to a site known as skin care talk……….and some interesting discussions with the ladies on this site have followed – if you would like to take a look or even possibly make your own comment please go to the following link:
http://www.skincaretalk.com/t/32133/another-botox-thread
This is only one of the Botox threads on this website and I was having a browse through all of them and noticed quite a few people mentioning that they had noticed ‘head and neck pain’ and ‘vision disturbance’ after their injections – however even when reading their posts I noticed that they mentioned these symptoms but were not really sure if it was linked to Botox??? We all know these are ‘classic’ symptoms……there was also a mention for anxiety however this lady only had this for a minimal amount of time after Botox but the way she described it as being ‘different’ from normal everyday anxiety was also interesting. I wonder how many people are out there feeling these side effects and not completely linking them to Botox…….and if they do ask their Dr about these side effects and they are told ‘Botox is safe’ that they then disregard these symptoms………….
Wow…..I went to the website……cannot believe that some people were actually almost attacking Cameron!! I posted info in his defense!!
Hi,
I also ended up posting too… thanks for posting the link. I find it fascinating that people are so quick to defend botox (even lay people, not dr’s) without even bothering to look into it. I think that Allergan has done such a good job at making everyone believe it is “safe” that people often don’t even stop to question (scary… but I fell for that too!).
There are posts on real self from people who use botox for medical purposes and I recall a few saying they were totally aware of the terrible side effects and did experience some of them but the trade off for them was worth it as nothing else managed their condition. I totally get that as they are making an INFORMED CHOICE.
Although I personally believe that botox should never be used/approved for cosmetic purposes, my main issue is that people are not told about how often botox spreads from the injection site. That even if there is not a severe reaction, that minor reactions also indicate spreading. Also that we are not usually told of the possible side effects in advance. In my opinion, if someone is truly informed then if they get any of the side effects listed at least they knew that going in.
I also didn’t know that botox contained human albumin until after I was injected and had my reaction. That is when the injecting dr told me that there was a slight chance of contracting mad cow’s disease from an injection!!! (Also HIV and Hepatitis.) Why wasn’t I told that before?
Anyway, I am getting off track…..
Hi, Lily and all others who have managed to find their way to this website, as I have. I am so grateful that one person had the courage and energy to create this website because there are so many of us suffering such terrible side effects from this deadly toxin. I will post my story at a later date, as I do not have time right now. I wanted to respond to Lily’s comment about people who receive Botox for medical purposes being informed of the potential side effects of Botox. This is absolutely false! Perhaps with some neurologists patients are informed, but I can tell you that I was not informed of any possible adverse reactions. As a matter of fact, I was told that Botox is perfectly safe and FDA approved for Cervical Dystonia, the condition from which I suffer and the reason that I received Botox injections every three months for two years, until the unthinkable happened. My neurologist told me that I might experience some pain at the injection site and that I may feel “fluish” for a day or two and that was all I was told. I am two years out from my last round of injections and though the initial four months of living hell have subsided, I am left with numerous other medical issues caused by the botulism poisoning. I have not improved vastly and new issues continue to creep up, even after two years. I have read on the Real Self board that some do improve, and I consider those people extremely lucky, although my heart goes out to them for their suffering. There are others, like me, who have been left with permanent nerve damage, among other conditions, for which the Botox is responsible. Had I been honestly informed (which is why Allergan discourages this with the doctors) of the possible side effects, I would have opted to try other methods to manage my condition. I can appreciate those suffering with medical conditions wanting to try this type of therapy, provided they are fully informed of possible side effects and handed a Botox insert with the Black Box Warning on it by their physician. Unfortunately, this rarely happens in the neurology field.
As a side note, doctors who administer Botox for medical conditions make thousands per round of injections as opposed to hundreds for cosmetic purposes. There is a lot of money at stake and Allergan pays these doctors handsomely for their “cooperation.” Have any of you looked up your own doctor on the Dollars for Docs website to see how much Allergan has paid them? You can also check out reported adverse reactions on the drugcite website. The neurologist who administered my injections was paid between $10,000-20,000 per quarter by Allergan. Why do you think he would never tell me that my symptoms were caused by Botox, despite my continually asking him what was happening to me? Big pharma pays the doctors off for their silence and it works. Not only do we who have experienced adverse reactions suffer the physical symptoms caused by the botulism, but we are then faced with a corrupt medical community who will not acknowledge the reason for our suffering and we are left to try to finds ways to attempt to “heal” ourselves and return to some semblance of the life we once lived. I hope that everyone is able to heal in time and put this misery behind them once and for all.
Welcome to this site, Alanna. Please do post your story when you have time…as we are all interested in hearing it. It would be helpful to know what issues you are still having at the 2 year mark. I am at the 21-month mark and am still hoping that I will fully recover. Am saddened to hear that you have permanent damage. Please let us know more. Thanks.
Hi Alanna,
I guess it was one or two people who posted that I read about getting injections for medical purposes who said they were informed of the possible side effects….. I can see by your post that they the minority though.
I am sorry for all of us, sorry you are still suffering after so long. Would also really like to know (like Soloist) what symptoms you are still experiencing.
Good! I agree with you Soloist! I was so angry when I read these discussions.
Maria.
Thanks for the welcome, Soloist & Lily! Maria…I didn’t quite understand your post? At the 2+ year mark, I am still experiencing the following symptoms…painful peripheral neuropathy (there are numerous symptoms that accompany neuropathy…I won’t list them all), autonomic neuropathy, painful cranial neuropathy, all over muscle weakness, fatigue, dry eyes, a serious eye condition which required surgery and now must be monitored for the rest of my life, gait and balance issues, intolerance to cold, inability to walk for long periods of time, muscle pain & cramps, and really bad brain fog. :( This is the short list and I’m sure that I probably left some things out. My initial symptoms were similiar to most of yours and consistent with botulism poisoning.
Prior to the Botox injections, I was quite healthy, other than the Cervical Dystonia symptoms (head tremors, neck and shoulder pain). I was an active, involved wife and mother and worked full-time in a long-time professional career. Thankfully, I have an amazing, incredibly supportive husband who has stood by me through this nightmare every step of the way. My husband has been my rock throughout this ordeal. I am now a stay-at-home-mom and take each new day as it comes. I never know what each day will be like, so I take things one day at a time.
Alanna…..am so saddened to hear this. How often were you receiveing injections for the dystonia and how much? Did you have these symptoms after each injection or was it just after the last round? Have you seen any gradual improvement with the symptoms after the initial improvement after the first 4 months? Are your nuerologists giving you any hope that in time things will resolve? Have you had nerve tests confirming the neuropathy? What was the eye conditions? Sorry for all of the questions. I can identify with all of your symptoms as I am still suffering from most of the same issues. I have better days than others, as do you. Just hoping that you can help educate.
Hi, Alanna!
My post was a responce to Soloist post
“Wow…..I went to the website……cannot believe that some people were actually almost attacking Cameron!! I posted info in his defense!!”
Maria
Hi, Soloist. Feel free to ask all the questions that you want! I understand. It’s the only way that we can learn about the perils of the poison because Allergan is not telling us the truth. We have to learn from eachother and help others. I am sorry to hear that you, too, are still suffering. How long has it been for you? Have your doctors been honest with you about Botox causing your symptoms? Have they offered you any treatments or any hope? How has your path to recovery been?
I was receiving injections every three months. I received 100 units each round of injections into my neck and shoulders. “Did you have these symptoms after each injection or was it just after the last round?” – This is an interesting question that you ask and I will do my best to give you the shortened version of the answer. I began developing symptoms (first symptom was tingling & numbness) after my third round of injections. I believe it was at this point that the toxin began spreading beyond the injection site. I promptly reported it to my neurologist, who basically blew it off and continued to inject me. With each new round of injections, I developed new symptoms. I reported them to my neuro each time. He blew me off and never told me that the Botox could be causing my symptoms and never suggested that I stop getting the injections due to my having numerous adverse reactions. I continually asked him at numerous office visits what was causing my symptoms, and he just shrugged his shoulders and said, “I don’t know.” What happened to the Hippocratic Oath? At that time, I had no idea that there were possible adverse reactions, as I had never been informed by my neuro that the possibility existed. I didn’t make the connection until much, much later. Finally, after round eight, I developed botulism poisoning. The toxin went systemic and I was in VERY bad shape for four to five months. I could not lift my hairdyer to my head, I could not hold my foot on the brake pedal at a red light (I stopped driving), I could not walk from a parking lot into a store. You get the idea. Those were the absolute worst months ever! The list of symptoms during that time was endless, but you all have done a great job of detailing them. After the first four to five months following the botulism poisoning, some symptoms slowly began to diminish, like the extreme dizziness, the stomach cramps, severe constipation, internal twitching, the shakes/shivers, etc. Other symptoms remained, or just hit a plateau, which is where I am at now. Some symptoms never got better, they just remained at a certain level of severity/intensity. They never went away, though. And, of course, there are the permanent conditions that I am now left with due to the botulism. And those, my friend, I am stuck with for the rest of my life. :(
I need to get going now. I will finish answering your questions this weekend when I have some more time. Alanna
Hi Alanna. You can read about my journey under my profile here….but in a nutshell…I am 22 months post-injections. The first 4 months were really bad for me as well….ER 3 times, hospitalized once, MRIs etc….had to leave work…move in with my mom….etc. I gradually improved over the next several months and by 14 monts post, I thought I was okay. I had a couple of months of being symptom-free….and then at 17 months post…I got completely slammed with the full bout of symptoms again….even worse. I did have a small case of seafood poisoning which could have set off the symptoms again. They started up the same way they did in the beginning….started with difficulty breathing, tingling, etc….ramped up over the next 30 days and by month 18 I was completely non-functional again. I was hospitalized for 3 days….in the ER 3 times (once by ambulance)….and months 18-20 were actually the absolute worst for me…even worse than in the very beginning. I was having seizures, body convulsions, panic attacks, on top of all of the other stuff, etc. I still cannot drive and am only working part-time. I am getting better again…..but still have the neuropathy, eye issues, dizziness, shakiness, shivers, etc….similar things to what you are describing. I have seen various neurologists…they have varying opinions. The one that I am seeing now (and who i have been seeing since the beginning) does not deny that my symptoms are a result of the injections…but she cannot explain why it happened. They only offer treatment of symptoms….which is limited as we all know….and she does offer hope that in time they will subside. I have had tests for autoimmune disorders etc that show no irregularities. She thinks the neuropathic disorders I am experiencing will go away…given that my neurological tests are “normal”…(although I have not have extensive EMGs tests….too much for my body to handle right now)…and the coming/going of the symptoms. I don’t know if that is what she REALLY thinks….or is just trying to offer me hope. So….I am curious what your physicians are telling you that has lead to the diagnosis of your condition being permanent. From what little studies there are about food-borne botulism poisoning….studies do show that neurological problems can continue for years….but I don’t know of people being affected forever. I think some people can have fatigue and breathing problems for a long time. Are those the things that you are referring to? Part of me wants to know the answer….and part of me doesn’t. I have to hold on to hope that eventually we will recover. That HOPE is what gets me through each day. The thought that I may have to live like this forever is overwhelming. :(
You can also read an article ” Long-term Outcomes of 217 Botulism cases in the Republic of Georgia”. http://cid.oxfordjournals.org/content/45/2/174.full
It was an intresting reading.
Hi, Soloist. I’ve been off the boards for awhile, so I haven’t had a chance to respond. I hope you are feeling somewhat better? Our paths sound quite similar and the tests we have been through also sound similar. I, too, have had hundreds of blood tests over the years since the botulism. I’ve had a full MS work-up, have had all of the rheumatological tests numerous times, have had a couple of EMG’s and nerve conduction studies, numerous opthalmologist exams, and the list goes on and on. I would probably have to take out my massive pile of test results to remember everything. I have been poked and prodded more times than I can possibly count. I am currently working with a new team of doctors who have ordered more invasive tests and I am at the point of walking away from it all. I am so sick and tired of the painful, invasive tests that show nothing. It is a waste of my time and money. Thank goodness my husband has excellent insurance coverage because they have paid out tens of thousands of dollars over the years on all of this ridiculous testing. Having said all of that, I do feel that some of the testing has been worthwhile. Without some of the testing, I wouldn’t have known about certain eye conditions that needed treatment (yes, it was caused by the Botox) and had I not seen other specialists, I would not have known about other conditions (also caused by the Botox) and how to treat and manage them. I know that you had previously asked about my eye condition, but I would prefer to PM that to you. I’m not sure how to PM on this site, though. I will tell you that in addition to the one eye condition, I have been dxed with severe dry eye and am now on Restasis (ugh…another Allergan product….makes me sick to have to give them more $!).
Have you gotten to the point that you have walked away from all of the testing and said enough is enough? When do you ultimately decide to call it a day and say I’m done with the tests? Can anyone respond to that and share with us when you made the decision to walk away from all of the testing? I would love to hear from those of you who have made that decision! Please, please share!
I suppose that we have to believe that we will recover because all we have to hold on to right now is hope. Living with this day in and day out is horrid and life altering. Hope is all we have. I must admit, though, you are more optimistic than I am about ever achieving a full recovery. I will try to be inspired by you and catch some of your enthusiasm for achieving a full recovery. :)
Hi Alanna. You can email me at iamhnow@gmail.com. I am still running around to various doctors…desparately still trying to find some help. I haven’t given up yet…although I am at the point where I may need to start with a new team as well. I am also going to try the more holistic approach…although I think some of my symptoms do require some close monitoring via some conventional methods(I am still having tremors and/or almost seizure-type episodes). One person actually suggested that I might now have dystonia as a result of the injections. I would appreciate hearing about some of your issues in more detail. Thanks.
I have to remain hopeful. It is the only thing that keeps me going. And…today…on Easter…we have more reason to hope. :)
Hi, Soloist. Thanks for the contact info. I will email you this week. I’m glad to hear that you haven’t given up your search for help. There have been times that I have and then my husband goes into what I call “game mode” and he gives me the strength and support to continue in this quest for help from the doctors. I guess men think differently than we do. :)
I’ve seen quite a few doctors and have had a few teams of doctors working together and, to be honest, most of it has been fruitless. You might get a little from one and a little from another, but overall, none of the dr’s that I’ve seen will acknowledge or treat for botulism. But, you keep pushing forward and don’t give up hope that you may stumble upon the one that will understand and do their best to assist. I think that’s why boards such as this are so critical for those of us suffering. You have to believe in yourself, you instincts and seek out support of others who understand. But, you already know that!
I’m sorry to hear that you are still having tremors and seizure type episodes. Are you on an anti-seizure meds? Any meds? Are they helping? I still get tremors but not nearly as frequently as during the initial stage of botulism. I understand the need to be monitored by conventional methods, as I also am on meds that require me to see an MD. As for dystonia, it is basically a neurological movement disorder that causes involuntary muscle contractions. There are many different types of dystonia classified by the location of the body part(s) affected. There is also a movement disorder called Essential Tremor. There are different types of tremors and if all you have is a tremor, I would look into Essential Tremor. Having said that, I just want you to know that I am not a doctor so I’m just throwing out some ideas for you. Can you share more info about your tremors with us? Alanna
The interesting (and frustrating) thing for me, is, I actually did not have the horrible tremors and/or seizure-type episodes when I first became symptomatic. Granted…I had pretty much all of the others and was really, really, sick…but I then got better over the course of Months 6-16. But…I went into a horrible relapse at Month 17…and, well, I am still in the relapse, without any dramatic improvement, at Month 24. The relapse brought back all of the original symptoms….but with the additional symptoms of the seizure-type episodes, tremors, slurred speech, and muscle contractions.
The “episodes” I call seizure-type, well, because, to me, that is what they feel like. My brain starts spasming (literally feels like it is cramping inside my head)…I have a hard time speaking when it happens and I can’t think straight. I don’t lose consciousness or pee my pants (I have peed my pants enough in the begining of all this….but not anymore!)! So…it starts with a feeling inside my head….and then it moves into a fast jerking head movements (up/down back/forth)…and then moves into my body and I violently shake back/forth. Sometimes it involves my legs and causes one to shake…sometimes not. The violent movements last for about a minute…and then I am exhausted. I can continue with the head tremors on/off for several hours after that. I sometimes get a second severe episode within the hour. If that happens…the tremors that I get afterwards are usually worse…with much more amplitude and then usually involve my arm. And…when I say amplitude…I mean moving back/forth up/down like 8-10 inches. And then sometimes I might have a week break before I get another one. These episodes started with my relapse in September and I had them for about 6-8 weeks…then they went away…but they started up again about a month ago.
The dystonic movements and muscle spasms also started with my relapse…and they haven’t really subsided. They aren’t focal…but more generalized. The edges of my mouth muscles pull backwards and my neck muscles tighten up..and move involuntarily. My right forearm muscle tightens up and pulls my wrist backward and my arm tightens up toward my body. My shins tighten up, usually after walking….and/or my feet get painful cramps to the point where I cannot put pressure on them at all. And…my upper back and trap area cramp up…sometimes to the point where I can’t move them…and other times they just spasm with movement..and my head gets pulled back in the process.
I have never had any sort of muscle movement problem or tremors before the injections. The last episode that I had was a week ago….it sent me to the ER for the 8th time since this all started. Of course, after waiting 8 hours to be seen…I was fine so was just sent home with the diagnosis of tremor. I have now started videotaping these episodes as, of course, I only get them at night when none of my doctors can witness them. My neurologist is considering hospitalizing me for a week and hooking me up to an EEG monitor/camera so that they can be captured (and…they will do things to try and induce an episode). I, of course, do not want to be hospitalized yet again (it would be the third time for me)…especially since I am desparately trying to hold on to my job (working part time…not quite sure how but I HAVE to!)…but at the same time I would like to know if I am, indeed, having seizures. Alternatively, I could possibly be hooked up to an ambulatory EEG for a few days, which is what I prefer although the results may not be as accurate.
Someone had suggested dystonia to me about a week ago. Of course….after reading about it and the symptoms….it sounds like the types of muscle spasms that I am having….but I don’t know. I have a followup with my neurologist next week and she is going to review my videos with the movement disorder specialists…although I have already seen one a few months ago and he indicated that my movements don’t really follow any “known” disorder (but, quite honestly, I got the feeling that particular hospital didn’t even want to touch me with a ten-foot pole).
Medication-wise, no, I am not taking any anti-seizure meds. I am on Remeron and a small dose of Klonopin. I think the Remeron helped when I first started it back in November…but am thinking I might need to alter the dose. The Klonopin, again, I think maybe helped a bit at first, albeit I only allow myself to take .25mg /day…which is hardly enough to make any difference (I am sensitive to meds…and really really am afraid of long-term benzo effects). My neurologist is suggesting that I try Neurontin again (tried it with the first round of symptoms but it made them worse). I have tried lots of different meds with the first go-around of this and most made me worse…so I am petrified to try much of anything else.
Depending on what I decide to do about the EEGs…the other tests that would be pending are an EMG and spinal tap…neither of which I really want to have done either. Granted, again, I want to find out what is going on…but if the chances are pretty good that the tests will not show anything wrong…I think the stress of the tests will really set me back.
Anyway….would really appreciate chatting w/you more. It sounds like our struggle with this has been similar and our timeline is about the same.
Oh…and meant to say that you are very lucky to have a dedicated husband at your side and is willing to “go to fight” for you in this process. Bravo for him. Granted, I know that ultimately WE are the ones having to fight this battle…not only with the physical symptoms but the emotional ones…and then having to fight the “system” makes it that much more difficult. I live alone, and although I do have a dear friend that has been staying with me for the past several months and drives me where I need to go (I can’t drive due…too much stimulation for my brain)…I have felt completely alone in this fight. If it wasn’t for this forum and the other women dealing with this horrible illness….I am not quite sure where I would be.
Hi Soloist
I have also suffered from the muscle spasms/jerks/shakes pretty much from the first month onwards…….at the 12 month mark all of these seemed to improve but the one that scared me the most was the feeling that my head was moving back and forth – only slightly – but enough that when it happened I felt like I was detached from reality – so if I was at work talking to people I really felt like I had to use ALL of my concentration to keep my head still (if that makes any sense?)……..I had about 6-8 weeks of this happening all of the time however in the last 6 weeks this feeling has disappeared. Even though I am feeling a lot better in regard to this symptom I won’t feel mentally able to move on until it is many many months of not having this – as I know too well that things seem to get back on track and then all of a sudden the symptoms return. I have to tell you I had a MAGICAL 2 weeks of pretty much feeling normal – facial twitches/pulling/headaches/ear soreness pretty much totally gone then 2 days ago I woke up with the ear fullness/dull ‘Botox’ headache and twitches galore in my legs and shoulders….and generally feeling that ‘brain fog’……..although these symptoms are much better than I have had I just don’t understand the cycling of the symptoms………and the further along I am the more frustrating it becomes…….I am getting off track but what I was trying to say is that I had also wondered if the Botox had somehow caused me to have a ‘dystonia’ like disorder……I am lucky that even though I have had a return of some of the symptoms the muscle spasms/jerks seem to have stayed away………I will feel better though after 6-12 months of them completing ceasing to feel like things have totally repaired themselves. I understand your concern about these uncontrollable movements…….I KNOW for sure it was the Botox as I too have NEVER had muscle spasms like this before. I am continuing to hope for full recovery and I want the fear of a relapse to be gone from my mind – only time will tell. Thinking of you and hoping that we all achieve a full recovery.
Hi, Soloist. Oh my! You’re ‘epsiodes’ sound frightening and painful. We need to find out what is happening to your body. I think you should proceed with the seizure testing. I am not too familiar with seizures, but at least the docs could rule it in or out. I don’t recall if seizures have been reported as a side effect. Have you checked lately? Not that it really matters.
I do understand the tremors, shaking, jerks, etc. There are certain types of dystonia that present as you are describing, but then again, it could just be a flare up of your initial symptoms or some other as of yet unknown condition. I do think you should see a movement disorder specialist who is well versed in their field. I will email you privately more about this and how to approach it. It will be a delicate situation for you, as they are the ones who administer a great deal of Botox. Forget the first one you saw…he sounds like an idiot. Believe me, they are not all created equal! The video tapes are an excellent idea and one that many movement disorder specialists are familiar with. Many patients video tape themselves and their episodes. I can tell you that post Botox/Botulism, I developed tremors that never existed before. Initially, the tremors, shaking, jerks, etc. were similar to your description, but they are not nearly as intense or frequent now. I still notice a hand and jaw tremor on occasion. They come and go. No rhyme or reason. Just appear randomly. The tremors seem to be worse in cold weather as well. My head tremor has also returned, though not as fast or frequent as before. The fact that yours are still just as violent after 2 years and not subsiding indicate to me that you should look into it further. Unfortunately, there is not much the docs can do for tremors other than offer you meds or Botox. I think it would be safe to assume that you would not go the Botox route. :)
Neurontin, huh? I tried that also on the advice of my neuro. Hated it. My tremors were so much worse on that so I stopped it after a short time. The unfortunate thing about meds is that it is trial and error. Sometimes you have to try a few to find the one that works best for you. Don’t give up, though. Eventually, you will find a ‘good fit’ for you. I also used to think like you with regards to benzo’s, but if you have a chronic, life-long condition, who really cares? Just make yourself as comfortable as you can and enjoy your life. As for the spinal tap…been there, done that. Had an 8 day spinal headache and would never, ever do it again. If your MRI indicates that you may have MS (unlikely) or they believe you have some type of infection, then perhaps you should consider it. If all of your other tests come back negative, then I would ask the dr why they want to do it, what they are looking for or to rule out and then make a decision. My family was convinced that I had MS even though my tests all came back negative for it. The spinal tap was the end of the road of the diagnostic process and I did it just to shut them up. :) I knew it would come back normal and it did. I think your dr should have a very good reason for putting you through that before you take the plunge. Emg’s/nerve conduction studies…have had two of them (arms & legs). Can be somewhat painful. :( I actually think that is a worthwhile test if you are having tingling, numbness, etc. It can be quite diagnostic. I would definitely consider that if your symptoms are such that would warrant further investigation.
I’m glad that you receive some type of help/support from your friend. I think it’s really important to have at least one person close by that can help out in a pinch, especially if you live alone. Are you in the US? What part? You’re right…our timelines do sound very similar. Isn’t that strange? It affects everyone so differently but we do have many commonalities. I will email you the info some time this week. :) Alanna
Hello everyone–as I have posted before my daughter suffered terribly with tremors, tics, facepulls, cramps, spasms, or whatever name you prefer. The fact is that it is painful and terrifying. Gratefully, she is going through a period of recovering from that symptom, and I pray it continues. I can not imagine how disappointed you are when you begin to recover and then relapse, and even worse the second time. My heart goes out to you…
I would like to add that I understand there is a direct relationship between acetycholine and the blood vessel dilation–that is why cold does really make you feel worse. Here is a link I found, (not the best for us non-medical people but at least you can get an idea)
http://www.cvphysiology.com/Blood%20Pressure/BP010b.htm
My daughter is trying to avoid rapid temp changes and especially exposing her skin to cold, and it really, really helps her. I can also comment that the only “help” we have found for her has come from more holistic approaches and I completely recommend looking into these. She is currently using massage, heat therapy and nutritional therapy. Just be careful that you aren’t trying anything drastic, you don’t want to do anything that will stress your body while you are trying to heal. Sending healing thoughts to all—