Tammy

My first thought as I read the heading was that you must be trying or discountining a SSRI / SNRI and sure enough, that is what's going on. Yes, this seems to happen to many of us with those drugs. Some find them helpful, but some of us they cause more problems for. I went for 4 days straight without a wink a sleep when changing from one SSRI to another and it was horrible. I ended up needing valium (ambien didn't even work) to get some sleep and finding a doctor that was willing to help (doctor who prescribed SSRI didn't think this was the problem causing the insomnia and told me to seek a psychiatrist.. . ugh!) was almost impossible. It took over 6 months after for my body to get back into somewhat of a sleep pattern -- Maybe you'll tolerate the change okay and it will be worth the side-effects right now. My doctor didn't choose this for me, but I've heard of some people needing a Wellbutrin type drug during the day and than something like Trazadone for night because they need something to keep them up but than bring them back down at night? Don't know if these drugs mix but something along that line for an idea to discuss with your doctor if this keeps being a problem.

The big thing is if her body is able to do so and that she has conditioned her body to be able to do so safely. Periodically, healthy teenagers collapse during running tragically (we just had a 16 year old girl in our area die during a warm up routine at camp) and therefore, caution needs to be taken in any sport. Over-exertion from exercise is what caused my POTS to become completely disabling/bed bound, so trust me, it is NOT worth giving up any amount of independence she may have just for a sport by ending up more weak/sick... please learn from my mistake If she decides to go ahead with trying a 7 min mile, if she feels even remotely not right, she needs to stop and rest, make sure not to over-do it.

I'm not sure if you'd be up to a trip to the twin cities for your appointments, but the doctor I had in St. Cloud who is now only at the University, was wonderful. I can't say he had any more ideas than what already has been mentioned by your current doctor, but he is very understanding and I miss having him as my doctor. The two other doctors that I now have the option of seeing either think I have CFS and the other one told me to seek physiciatric speciality care????? And these guys are electrophysicologist... so I'm also hoping to find someone else as I can't tolerate driving to the cities right now. Just PM me if you want his name. - Tammy

When this does this to me, I usually move to the recliner in the livingroom and if I can fall asleep for a little bit, they usually go away for a while. They definitely are worse when I'm very tired or sick.

Yes, I have times that I pee a ton... earlier today I had to try and venture out to the grocery store for a few things and knowing I might be too pooped to pop to make it through the store, I got some stress over it and sure enough, had to pee every 5 minutes for about a half an hour. I'm amazed how much I can go sometimes without drinking any more water! So you are not alone with this annoying symptom

My understanding as to what is going on is that your autonomic nervous system is oversensative to adrenline, so the normal adrenaline that is produced, like say just by waking up, makes your body think it needs to go into a fight or flight mode and therefore the heart pounding, sweating, etc. As for coping - I have to second Ernie, in telling yourself that your body is just having a reaction, you aren't going to die, and it will pass. Typically, I just keep in mind that I've been there, done this before... so to speak... and to try and just breath through it (being short of breath is a bit hard to breath through it, but it can be done and usually clears up quicker if you can stay calm But I must admit, the first few years of dealing with it, I definitely had a harder time in coping with them (adrenaline rush type symptoms/panic attack reactions), but after having so many that I've lost count (almost daily before starting on a beta blocker) you will find what works for you to get through them. Hope things get more toleratable for you - Tammy

I'm also on synthroid, but for the first 3 years of being on it, it was fine. Than I got sick with POTS and sometimes wonder if the two illness don't do well together, like they feed on each other at times??? Sometimes I do take a half of pill periodically if I feel like my throid is on overdrive, but this isn't recommended by my doctor, I just do it because it works well for me.

Not sure if this helps much, as sleep disorders are not just a simple "can't fall asleep thing" but if he doesn't eat many foods that help body convert to tryptophan, such as turkey, cheese, fresh cherries, some nuts... he may want to add this into his diet. It may not do a lot but it can't hurt to try Hopefully finding somethings that will help him get some sleep will help improve some of his symptoms, enough to be more functionable.

Yup, I have to second the itch and scratchy medicine (benedryl) helps with this at times. I haven't figured out how or why... also, Zantac has helped me which I found out accidentally when I had reflex issue at the same time as these rush sensations? Also, if it's really out of control, a tiny amount of xanax or klonopin helps, but never take them at the same time. You'll find something that will help get you through them, just keep on trying different things and you may find that certain 'rushes' and their level of severity are helped with different things at different times. I know for me, with a toddler at home, if I have them during the day, I have to try to use the benedryl or even tylenol, because the other meds make me so sleepy at the same time, I can't function to take care of her - so need to be smart in how you use them. Hope you find something(s) that work to make them more toleratable.

Yes, chiming in a "me too" Movement makes me feel dizzy lightheaded, kind of disorientated sensation at times. Bright light almost makes me see spots as if about to faint on top of the other symptoms at times. And Noise/sensory overload, or carry on a conversation for too long, all triggers. I feel like I'm a catepiller that needs to hide in my cacoon in order for my body to somewhat regulate it self! Tammy

I'm guessing not sweating is a bad thing too, but can't say I feel well at all even when I do sweat, so once again, what makes one of us feel good, doesn't do much for the next. Oh well, I guess that's why were all here

I'm wondering if honey can be a symptom trigger? Anyone else notice this? Thanks for any input! I'm just thinking I must have done something else to flare me this bad today, but the only thing I can think of is that I had some honey today, which I normally don't eat, but that seems to simple - Tammy

No you are not the only one that sweats a lot. I read how many here don't sweat, but I wonder if that is one of the differences between hyperadrengic POTS and the non-hyperadrengic form? We all have so many cross-over symptoms but there are definitely a few that don't. Hope that makes sense, as I'm feeling awful right now and can't exactly think straight - Tammy

Hi Hollie, I know also how your feel. My daughter is 3 1/2 and very energetic as all toddler and kids are - which of course, I am not! I have also gotten looks from people wondering why I'm not playing with my daughter outside or running after her. However, I could never walk 4 blocks to a park... Just walking inside my house is challenging, so you may want to try playing closer to home if you are able to. I'm not sure if you have a backyard, but if you do, and it's big enough to play back there with them, find things they can do and enjoy - such as a water sprinkler pad, water activities seem to keep them busy for hours! Sand boxes are good too and also a tricycle / bike in the backyard is something they can do too. I hope you can find activities this summer that keeps them busy but yet allows you to not over=extend your energy limits Take care, Tammy

Hi Shelley- Welcome to our little family - Tammy

Congratulations on the engagement! Always good to hear positive news in the social lives of us POTsies As for the Paxil, I had tried it as one of the first drugs when I first started with POTs symptoms.... My heart raced really bad from it. Turns out that this is a common side-effect of Paxil. Since then, many friends of mine and some sibblings of my husband who are all nurses, have commented on how they "hate" the drug Paxil for the patients they see or anyone. Interested to hear the medical fields opinion, yet many doctors continue to prescribe it. BUT I believe there are some people who do well on it, so once again, it varies by person. This is just my experience and knowledge of it. If your doctor is saying to try just half, than definitely do a smaller dose. When I tried it, it was before I had put together that I had somehow become sensitive to drug dose amounts, so I did a normal dose. I now need about an infant size dose amount for anything. Sending you good wishes in finding something that will help.

I would keep your appointment with your doctor so that this situation is documented in the event that the exposure causes any long-term symptoms. Good luck with your appointment and hope your feeling a bit better soon

Alizee- Exact same thing happened to me and continues to happen if I switch doctors. Seriously, what you wrote is verbateam (sp?) to what these arogant doctors have said to me also. I miss my main Electrophysicologist that I had for 5 years.. he was so understanding and tried so hard to find something that would work to help me. Now I have a different one, whose reaction was that I just must not be drinking enough water... I practically float with all the water I drink - but I do pee a lot too, so maybe it just doesn't absorb Thanks for the post... I'm not as alone in all the challenges I go through and I need company in my misery! - Tammy

Yes, I experience the exact same reaction to any sort of emotional stimuli, good or bad. So frustrating as I'm like you in wanting to be there for people, but my body doesn't allow me to do so. I also take a small dose of Klonopin when things get really bad, but it does leave me really fatigued/tired as a side-effect, so not perfect - however, it seems to take less time for my body to recover from a stimuli than without it. I would check with your physician about trying a very small dose of either Klonopin, Xanax, or Ativan for situations as such. I wouldn't take it on a daily basis as they are drugs that have a potential for tolerance in your system. I hope you can find something that will aide in the quality of life during these times. - Tammy

Yes, it is hard being young and dibilitated by illness. I also feel so cheated in life and that it's just not fair. Today was really hard for me emotionally dealing with being sick too. I also became sick overnight on June 16, 2000 and have also gotten worse... Sept 2, 2005 is when things really went down hill, so I kind of have two anniversary dates. .. that I mourn my past healthy life. I recently have been hoping to be able to find a good friend who could really relate to what I go through, just for us to be able to support each other and all and talk/visit on phone, etc. but than I realize that I don't have the energy to try and keep up a friendship so what's the point All the little let downs seem to add up at times. Hope you are feeling less overwhelmed and content soon.

Hi Dayna, Sending you a big HUG How frustrating to have to deal with another diagnosis.. Even though hearing that many people can manage their diabetes with diet/exercise alone may not feel like much of consolation right now, I also know my mom and brother manage theirs doing so, and with time, the changes you need to make will become second nature (easy to say but hard to do). I absolutely fear getting diabetes since I know it runs in my family, and since I'm sedentary due to POTS (I live in my recliner) and when I get stressed - if I'm up to eating - I hit the sugar pretty hard... so I can imagine the **** you are going through right now. However, you are strong and faith-filled, and you are never alone in life's struggles. (If you need to smile but you feel like you just can't - take a paper plate, draw a happy face and punch a hole on each side to put string through to tie it around your head... I'm sure once your husband and family see the effort your making to cope with the situation in such a positive way, you'll all be smiling God bless, Tammy

Sounds very similar to a TIA... get him checked out as soon as possible, but try to not get yourself stressed out about it until it is confirmed that is what's actually going on.

Helps control the adrenaline surges in my system and even out my heart rate. Negative is that is causes even more fatique than I normally had already.

Does anyone else have this sensation and if so, any idea what it is? Right before I get a profound weakness spell (literally too weak to walk), but is different than when I feel lightheaded/faint like... I apparently have a very fast heart beat which seems different then the typical tachycardia/fast heart rate I also have. I have never caught what happens before these weakness spells, but recently I was checking my pulse right as I felt this weird pressure in my face and my heart actually went so fast it basically vibrated, so couldn't count the beats as it was too fast. Then it paused and went back into a slower pace and my pulse became extremely faint... and of course, than the profound weakness hit and it took about an hour to be able to get back up and walk a little. These are now happening more frequently which may be why I actually caught what was going on. Is this just POTS related or a seperate thing? Thanks for any ideas -Tammy

Hi Rachel, Welcome to the forum. In answer to some of your questions: 1- Yes, Many of us are resistant to drug therapy... they make us feel worse many of the times, it takes a long time to find the right combination for each individual... much trial and error so to speak. 2 - Haven't been to Dr. Grubb, so can't say if good idea or not... finding a physician in your area that is familiar with Pots and sympathetic towards it may just be as good if willing to work with you 3 - I sleep with a bed wedge and it does help some 4 - Yup, told to drink lots of water and extra salt... still feel awful most of the time I also can relate to having a toddler and living with POTS and all the challenges and disappointments that entails... you are not alone Take care and thanks for the prayers... sending another prayer your way - Tammy