deeplyset

WOW... THANK YOU... I never really thought about it this way. And it so true. I just I'm so tired of not being validated by Docs and always questioned. It makes me question myself. I shouldn't do that. It helps to know you all are feeling and experiencing the same things. Thank you for your support and help. POTS is just so much so often, I often get overwhelmed and feel so misunderstood. Especially by the medically community. Thanks for being there. Rachel

I went to the Mayo Clinic and saw a Antonomic Specialist in Dec. He gave me a few very practical suggestons to deal with the POTS that has immensely helped me so I thought I would pass them along. I know that may be elementary for some but they also my be revolutary to others (as they were to me). He showed me a technique while standing to cross your legs (like as if you had to go to the bathroom) and squeeze your thighs. This pushing your blood pooling in your thigh muscles and legs up into your heart and helps your heart not have to work so hard. He tested my heart rate and blood pressure while I was stand and did this and my immediately dropped by 20 bpm. It also deceased my dizziness and nausea. It has increase my ability to stand. And has help me get through quite a few tests already. Next, to told me that instead of drinking Gaterade (as suggested by the Mayo Clinic in Scottsdale) that I should drink Pedialite (a baby drink for dehydration) because it is higher is sodium and lower in sugar than Gaterade is... It found that it is like an Energy drink for me and much for effective then the Gaterade was. Next, he pointed about that a lot of my symptoms were being exagerated by two factors #1 mirgraines and #2 hyperventilation. In identify the difference of what was what I would be able to identify what I could control better and what I couldn't. I have felt very helpless and "victimized" with my whole POTS experience. Knowing there were factors I could control and things that I could contributing to feeling better has help me feel way better. He said the one of the biggest problems POTS patients face as a whole was hyperventilation. It agggravates their symptoms. He pointed out to me that not CONTROLLING and really focusing on steading my breathing was causing me to #1 panic, #2 get weak really fast, #3 pass out quicker, #4 light headness, and other things like confusion and disorented because of the lack of oxygen. Just focusing on breathing steadily has been really REALLY hard but has help me feel better and not get nearly as bad off as I use too. I never realized before that my mirgaines were playing such a big role me me feel so rotten. He pointed out that a lot of my weakness, and the vision disturness, speech disturness, the paralization and some other symptoms were the mirgaines. I then later was diagnosed with hemiplegic migraines (headaches associated with paralasis). Anyway. I don't know if any of this will help anyone else but I hope so because it sure helped me.

The first thing I did was just STOP. And rest. I am able to stop just about everything and so I did. Because I was in so much pain I to had stop sleeping as well (well other POTS issue kept me up to but the pain made it way worst). So, after about 2 and 1/2 weeks of just resting my body doesn't have all the joint pain. And I'm sleeping way better. Which is turn is helping. I did a couple other things too but I'm going to post some new topics about those. I'm now in the process of slowing increase activity to BLUID MUSCLE. That will support my joints and bones so I can do the activity I want to do (ie walk and stand) activity I'm capable of health wise (pots) but physicaly deteriated so can't without pain unless I build the muscle back first.

I know this may sound like a dumb question but I want to know... I was already diagnosed with P.O.T.S., had more than one positive Tilt table test. But the last couple times that did standing and heart rate/blood pressure tests on me my heart rate did not do what it normally does... IE the classic POTS rapid increase within 2-10 to over 120/150 bpm. I was having really good days on both the tests but I thought that wouldn't matter?? And I have been able to do more? (Right I'm down again now...) but I'm really puzzled by this... Why was I able to make it standing the full 10 minutes that time? And my heart only got up to like 98 to 115. And at others I can't. I'm just so confused. I'm frustrated. Does anyone else experience this? Do you still have POTS? How do you know if you "get rid of it"? Does it ever go away? I feel so confused...

Luckygoat, I just started to have this happen to me... did you find anything out about it... I'm kinda scard and I don't know if I should talk to my doctors about it or just ignor it. And since the last one I'm kinda just shaking inside. Like it just not going away. I just don't want to be told it's all in my head and nothing wrong. When it so scary. Rachel

I know this may sound kinda "silly". But it is working for me. My joints (knees, ankles, hips, etc.) were hurting really but and I talk to my massage therapist about it. He is very knowlegable about a lot of different things but what I like most about him is that he looks at the body as a whole and what you are doing not just at syptoms and "piecemeal" (if that makes since). Anyway. When I told him about what was going on he was like "well, the answers simple your doing to much." I was frustrated at first because I'm like everyone else is always telling how I'm not doing enough and how I need to exercise. I just get discouraged and frustrated. He went on to say that was true to but with POTS because it's up and down so much that I lose muscle mass and muscle support the bones and joints and if I tried to do exercises, etc. without proper muscle mass to support the bone and joints (because the muscles have deterianted) that the bone and joints grind and press on eachother causing pain. Therefore his solutions was take it down a notch. Go slower and at a smaller pace. First BUILD the muscles that you are trying to get your body to support you (like those you lost when I couldn't stand and walk) then when I go back to doing those activity I would be in so much pain. And he's right. I hurt so much less. My body was trying to tell me I was not going about doing it the right way. It's just hard because IT'S SO SLOW and SO FRUSTRATING... I don't know if this will help but I hope so... Rachel

I saw the doctor (my neurologist) today and he said that they are probably a reaction from fatigue and hyperventiation where my body is not getting enough Carbon Dioxide. He said it is a type of condition but didn't tell me the name for it... He suggested that the next time it happens to breathe in a bag... He said the main characteristic is labored breathing and numbness around the lips... It could be caused by POTS or be in addition to POTS... I don't know... It's so comforting to know I'm not alone and that these whacked out things are happening to other people. Thank you so much for sharing your tips and stories... I will be thinking about the Potassium suggestions. Thanks...

A few days ago I collasped after attempted to crawl up a few steps. I obvious over did it and was having one of my "normal" spells but when about an hour or so into it when I was laying down my whole body stiffen (as if concrete was being poured into me) and my hand cruled funny and my face controted and I was kinda paralyzed. I couldn't speak either all I could do was gruggle. I could move my eyes around in my head a little and cry. When I did try to move I would twich. But nothing else and when people moved me my limbs would popped back to the place they moved them from... It lasted from about 20 minutes or so and then I slowly started to regain movement ability and speech slowly started to regain a little at a time... IT WAS TERRIFYING... I don't know what happen... I've been paralaze in my left hand and rigth side of face before but never like this before... Does anyone else know what this is??? I'm assuming it's just another POTS thing... It took me over a week to recover to a standing position again and I still feel a little funny... Help?

I've been taking Topamax for over a year and a half with a lot of success for my mirgrines! I oringinally started on Depokote but because of the weight gaining side effect they switched me to the Topamax (which has a weight loss side effect). The switch over was pretty hard and it took two or three tries before we successfully did it but once we did it was great. It fail the first couple tries because we tried swicthing me over at too low of a does and my mirgrine got way worst. Anyway I take 100 mg in the AM and 100 mg in the PM now... That's a really high dose I started off way lower and have increase over time because the headache have worsen in severity. But, Topamax for me has been a God send. So was Depakote in the beginning. My headaches were so bad I was in the hospital doped up on Morphine and all those other major drugs and they were just knocking me out because I was in so much pain. But then they put me on Depokate... and were about to get the headaches managable... I also get regular Marcain (sp?) injection that numb my occipular (sp?) nerves which are kinda like trigger point injections (but less intense) and with these two methods (topamax, and the injections) and not over doing it my headaches stay Very MANAGEABLE. Sometimes I don't even feel the pain!

Wow, thank you all for the information. No I don't live in Ohio. I live in Nevada. But I have some friends who live in Ohio so I would be able to stay with them if I went there and therefore would be able to save on costs. Well, when it comes to doctors its doesn't sound like the overall opinion is very high with most of the other OH doctors other than Grubb. I do have a PPO plan with my insurance so maybe it would be worth it just to do it and work the money out??? I don't know. Does Dr. Grubb ever look at what CAUSES of your POTS? Is he insterest in the Research aspects of it? How long does it take to get in? How do you start the process? Where should I start? Thank you all for your help.

I would really like to see Dr. Grubb (since he is the only one anyone ever hears about) but my insurance doesn't cover him and I can't afford to see him on my own dime... But I would like to see a POTS specialization... SO, I was wondering who #2 and maybe my insurance will cover them...??? I have friends who live in OH so, I looked up the doctors (from the dinet website)there that are covered by my insurance and they are as follows: 1. Thomas Chelimsky 2. Barry Deran 3. Fetnat Fouad-Tarazi Does anyone know anything about these doctors??? Are they any good? Are they worth going out of state for? How do the measure up to Dr. Grubb? Etc? Etc? Any information is helpful... I have doctors here that are treating me but they don't know very much about POTS. And I would really like to have a Specialists on board... Thanks for any help. Rachel

My shoulders and neck hurt and get stiff all the time also. I've wondered if it's just a POTS things or if it's because of migraines (which are a POTS thing also), where you tend to stiffen your neck and shoulders unnoticable because of the severe constant head pain... I just got diagnosed in June (because sick for 2 years) at a research clinic (at the Mayo Clinic in AZ) I found they just told me what I had and that was it... I'm trying to find a doctor now who knows something about it... Most important thing for me has been having a doctor who is insterested in HELPING you. AND OF COURSE like everyone says a specialists in POTS is still really important... I'm just yet to find one in my area... Here is the physician list that is posted... You may have already checked it out but if not, here it is: http://www.dinet.org/physicians.htm (I have edited your post to remove the quote of DSM3KIDZ entire post)

Dizzygirl, I'm so sorry that you are going through all that... My heart is heavy just hearing it. I've been really blessed. I couldn't image having people push me like that in the condition I'm in. I would be in the hospital in no time. I don't have words of wisdom or anything really special to say... I just want you to know that my heart really goes out to you and I'm really sorry you have to deal with such a heavy load by yourself. I'm hoping that someone with be brought around to help you out and carry it with you. I couldn't image doing it alone. (deeplyset, I've edited your post to remove the long quote)

I'm insterested in meeting other POTS patients that may live around me. I would like to start a live support group in my area for people with POTS who may be insterested... I find I have been having a really hard time with everything since I have been sick and the idea of getting together once every couple months to talk to other POTS patients dealing with similar issues I am and being able to talk things though would be really helpful for me and I believe for others also. It would be helpful to share tips, ideas, things about doctors in our area, etc... If you are insterested please send me an email and let me know: angel_2me30@hotmail.com

This is so relieve to hear! I thought something was really wrong with me becuase it was getting so sick after a "loppy" spell. I also takes me days to recover back to my "normal". Thanks everyone for your sharing your experiences! They help me feel like I'm not alone and that there's always someone out there that has it worst... Thank you!

I was wondering if I was abnormal or if there are other patients out there with POTS that experience the same thing that I'm experiencing after I collapse.... I lose control of all my limbs (ie neck, legs, arms), as well as speech ability for about two minutes then when my speech comes back but it will be slurred for about 10-20 mintues (sometimes longer). I'm also usually confused and have a hard time talking and condination my hand and legs (it will take anywhere between 45 mintues to 3 hours for this to return). My eyes also will keep roll back into my head. During this time I have to stay flat or near flat or I will collaspe or faint/passout again. I have a really hard time breathing and will hypervinate easily. I feel like my whole body is not getting oxygen even though I'm breathing. I'm really weak the whole time. I call it being loopy. It will happen whether in vertical position or too relaxed sitting or laying down. It's brought on also when people mess with my neck area or shoulders to much.

Hey to bad you can't vote for more than one! I would have mark three!!!! somatoform/conversion disorder, depression/anexity, and panic attacks! So frustrating!

Well, things with the lawyer didn't go great but didn't go bad either. He said that until I can get a someone who can directly link my experience with POTS and the car accident together then he would not be willingly to take the case. I asked him who he would want to do that (since my MD feels strongly my POTS was cause by the accident, and he feels she is not qualified to say that) he said it needs to be a nuerologist since he feels POTS sounds like a neurological disorder. I just don't know... WHO would be an expert witness to LINK the two together? The medical evidence in my case shows that my POTS because immediately following the car accident. But NO ONE really can know for sure that what POTS is cause by in any SITUATION right???? CAN ANYONE HELP ME WITH THIS OR AT LEAST DIRECT ME WITH WHERE TO GO???? I'm having a harding enough time finding a doctor willing to actively treat me (other than my MD) let alone get into the legal matter. The lawyer also stated that if there are other people out there that have presued litigation relating to POTS that I should attempt to contact them... Suggestions.

I tried the Effexor for about the first three days. I stopped it because I was have almost all the side effects even the unusal ones (i felt like I was going mad!). I called my doctor and she said it was a good idea. She is going to try a SSRI now. Thanks for the suggestions! I'm still nervous ESPECIALLY after this experience. But I'm learning more and more to accept the fact that I have been having an Anxiety probably that is really making life hard. And until I do something about it I'll never know what it's like to be "normal" and then be able to learn a balance by myself without medication. Also, who knows maybe I'll be a blessed one like many of you and it stop or at least minimize the collasping! Thanks again everyone.

Wow, to wierd... The more I'm learning, the more I'm insterested. I also hit my head at back of my head near the top of my neck (on the left side)... I'm really wondering about the connection??? Your the 2rd person that has said that they hit there head there too ... Do you have any resources about the connection Becky?

It's so helpful to hear that other people have gone through this. I actually went to the Mayo Clinic in AZ. And went there twice for a week (pretty expensive). I don't know if they ever left her diagnosis in my file. She said I had a conversion disorder (basically meaning I had some trauma in my childhood or life in generally that I could cope with so I developed an illness that prevent me from doing things I didn't want to do) and Non-epileptic seizures which is where this from your pass come back that you don't even realize (sub-consciously) and you passout/faint/collapse looking like and really seizures but it's not because you can't handle what going on around you. But either one of these you can't debt when it comes to POTS because they test it by giving you a phsyc test and it you physical symptom complaints are high and your stress complaint are equally as high you have a conversion disorder (also mind you they will call anything they can't explain that). Mind you also, that the test ask allot of physical questions that POTS patients are really experiencing. And they were right my stress levels are off the chart because I'm not managing stress. Then with the non-epileptic seizures when you collapses and pass out for me most of the time it looks like a seizure but it's not, and because she couldn't explains that's what it is and I'm collapsing right before I pass out when my heart gets to about 130. AND my blood pressure is relatively stable.... AHHHH. So, because my brain waves don't change their FAKE seizures in her mind!!! SO FRUSTRATING. How do you argue it???

Thanks for the site up date Kite. I site wasn't able ti reach that article directly it said it was not available however the site is awesome there is so much information... I'll keep looking for information. WOW, Big family. Good luck with the MOVE! Thanks again for the help. And let me know if you have any more information and anything. I;ll let you know how it goes with the Lawyer... Thanks everyone.

Would that cover any state??? I live in Nevada? Thank you all for your help. I finally got an appointment with a lawyer on Thursday! I'll keep you all updated! Any luck with that site update - Kite?

Michelle - Do you know how I can get a hold of that person?? Or the lawyer?? I'm having trouble getting anyone to take my case... And I also had a traumatic brain injury. Kite - I tried to open the link to that website because I would really like to get a hold of the article but the site is coming up unavailable. Suggestions? Thanks so much everyone!!!

That's about the same place I hit my head. Bottom of head, top of neck on left side. I read about the Brain-stem dysregulation on http://www.dinet.org/what_are_the_mechanisms_of_POTS.htm about "One patient reportedly improved after microvascular decompression at the region of the left medulla" (which is right were I hit my head) and so that got me thinking... Any Ideas?