Ckitz

I wear a vest with ice packs when the heat is bad here in Florida. Heat can cause me to get seriously ill. I also have bed linens that don't absorb body heat, so I am not suffering as much at night. My heart goes out to you....it is serious for us to deal with heat. I really hope they take this seriously.

Thanks..." Freeked" , that is very interesting. I haven't seen anything ref this, "pots attack" while reading up on POTS. I will have to look more.

also, Thanks so very much, Katybug. I am going to check out the sites you have listed for me. I will be thrilled to death if this is the answer to my attacks. I have dealt with them since childhood and am now 59, still looking for answers. Hopefully I can finally put this mystery to rest.

Katybug....just read your input. So happy to hear that you know what I am talking about. No doctor can tell me anything about stomach migraines. Just blank stares, and I even have had doctors that don't believe me....and others that said, " Oh, just come to my office when you have one, so I can see it". He was obviously not listening to my description of an attack. It is a hellish thing to live with.

Do you know of any doctors or any literature ref stomach migraines? I will also check your EDS forum.

THANKS SO MUCH

I appreciate your input. I have had these attacks all my life. I have been to so many dr's ref this, and none can give me answers. Once they thought I had Acute Intermittent porpheria, but ruled it out. In Oliver Sacks book, "Migraines" he describes an attack like this, saying it was a stomach migraine.( he is a neurologist who has written many books) I went to a neurologist, and found out that stomach migraines are basically a illness that no one knows anything about. You will see a childhood stomach migraine, described on the internet, which is different. I was really hoping that my dysautonomia would be the answer, but no one is describing these attacks.

My heart goes out to you if you are dealing with this. It is not something I would wish on anyone. Luckly, my attacks have not been as severe in the last several years, and I think it is because of more rest, less stress, and better eating habits.

When I say attacks, I mean, weird headache, nausea, pale face, with very cold lower face, slurred speech,

Very severe chest pain, cramping,vomiting, passing out. These attacks can last around an hour. Afterwards, I am very weak and take days to recover, and have been hospitalized on occasion. Some attacks are a milder version. They are not panic attacks, and they occur usually in the evening or even in the middle of the night.

I don't hear anyone with POTS talk about this. I want to know if anyone else deals with this.

When I stopped taking Atenolol, which is blood pressure medication. My heart palpitations were constant,, and my tremors got worse. These issues are common and not dangerous....just yucky to deal with. My doctor told me that blood pressure medication is often used to help these issues.....so now I am back on Atenolol.

I do warm water Ti Chi, which I have found to be helpful. Though I don't always like the warmer water, it hasn't been an issue with my intolerance of heat.

I also did the two times a week swimming. I love swimming. It was too much and made me ill. My cardo doctor said that swimming isn't nessisarily best for dysautonomia because we are not pumping the blood as we are in bike riding, walking etc. though it is a good overall exercise. I now bike ride, walk, and do warm water ti chi exercise. I do not tolerate heat well, but for some reason can tolerate warm water exercise. It is not hard cardo type exercise, but stretching movements in the water. Anything more than that makes me sick.

I think my persistence to continue exercising, has kept me from becoming more disabled.

In addition to these suggested exercises.....I would highly recommend warm water exercise classes. I go to a Ti Chi class, which is stretching exercise. Not the more cardio exercises classes. That is if you can tolerate warm water or standing in water. I don't have tolerance for heat, but still manage these classes.

Most hospitals have these pools and classes.

I have been ill for many years. I used to cry at the thought of having to run errands. But I was a single parent with no support, so I had to do things no matter how I felt. I have learned over the years that if I allowed my physical fatigue or pain to determine if I participate in life, I would never leave my home. I have learned that once I am involved in interacting with people or experiencing a positive social event, it serves as a distraction from my suffering. I am limited time wise, because it, in turn, activity can make me more ill., and of course, standing is tough. It is a tough balance. But isolation only makes things worse. Now that my children are gone, I have two little dogs that bring comfort, and force me to go outside. And after many years of failed attempts to find something to volunteer at..because feeling useless is no fun...I am happy to say that I now go to nursing homes and schools with my registered Pomeranian therapy dog. I only spend around an hour to an hour and a half of my time, and only once or twice a week, so I can pull it off.It is not easy, but the alternative is loneliness and no distraction from my suffering. Having said this...I know everybody has different problems and limitations that can be incredibly challenging...I just know that I am stubborn, and refuse to be totally left out of life....and so push myself, even though it can be unbearable.

I take Tylenol at bed time. It helps me sleep....otherwise I toss and turn. I was given Oxycodone for pain, and found it could make me nauseated and about to pass out, if standing. It also kept me wide awake at night. I am just happy I have Tylenol that helps.

Thanks SO much for all your support, and suggestions for reading. Very helpful! I need to read Dr Grubs book. Valiz, I am also happy to hear from someone around my age with a similar story. I think the hardest thing all these years was having such a life altering illness, and also incredibly tramatic attacks, in which I felt I was dying...and being treated dismissively by doctors. Neurologists were the worse. It is a tough road to travel with no understanding or support. I am still in shock that I finally can put all the puzzle pieces togeather....and have a name for why my life has been so challeging. It is sad it took so long, but I am at peace now, knowing what is wrong with me.

Thanks again everybody

I had the same weight gain problem with Lyrica and stopped taking it. I taper off very slowly, and add very slowly. Hopefully that will make the transition smooth. Everybody deals with changes differently. I have found Zoloft to have the least side effects. As far as weight goes....that is tough...I also eat very healthy, exercise,and avoid bread and sugar. I have gone down in weight since stopping Lyrica, but not that much.....it is very frustrating. So many of these meds cause weight gain.

I also had no interest in drinking and could go a whole day without anything. In fact, unless I am thirsty...which is rare, I absolutely dislike drinking water. So now I buy a low calorie fruit drink, and add half water, and then I can tollerate drinking. I also have a very rare episode in the evening, in which I become raviously thirsty, and drink so much it makes me feel sick. Weird.

Katybug....thankyou so much for replying. It definately is confusing. I will continue reading more on this...

Hi everybody . I am an 59 year old woman, who has been ill since childhood, but only got diagnoised recently, after taking a tilt table test. I have experienced severe "attacks", as I call them...which can land me in the hospital sometimes, most of my life. I was funtional til about the age of 35, after which fatique became more and more of an issue. At the age of 40, I had severe cognitive problems and had to stop working. Not fun when you are a single Mom with two children. Then, pain and assorted other issues became worse, and I was diagnoised with CFS and FMS, and autoimmune issues. I couldn't find out why I had random falls flat onto my face, and no one could explain my "attacks". No doctor ever suggested I go to a cardologist, til now. I finally took the tilt table test and was diagnoised with Neurocardiogenic syncope. The discription of Neurocardiogenic syncope seems extremely inadiquite. Basically, says that it is just fainting ( not that fainting is no big deal)and the person is otherwise fine. I didn't even realise that my falls were fainting! And as far as my attacks...they were so horrible ( unbearable chest pain, pale, sweating, slurred speach, severe cramps, at times, and vomiting and diarreah....lasting up to an hour! And very sick for days afterward. Though I may have passed out while on the floor, the last thing I thought it was is a fainting spell! Don't understand this. I get sick standing, but usually lay down before passing out....so fainting is not an issue. When I read about P.O.T.S, and dysautonomia, I recognise all the different things I deal with.... Do I have the wrong diagnosis? I would greatly appreciate any thoughts on this.