Things Are So Bad Right Now.

[sarct]

I'm not kidding. I can't believe how hard life is right now. I am beginning to feel a bit depressed. Everyday I am exhausted before I even get out of bed. I am having non-stop episodes. I am miserable. I am actually beginning to think my episodes are making me dumb. I just can't think common sense thoughts anymore. It's embarrassing. I am being petted by my family, because they will say it's ok Chrissy, we still love you even though you can't think. I feel like such an idiot. I am not on any medicine. The specialist I went to see was out on medical leave so I saw his associate who said I don't have POTS, because people with POTS don't have constant low BP. Mine was 80/52. But my other Neuro said I do after seeing the results of my 24hr eeg monitoring. I am livid. I have no idea what to do next. I don't go back to the specialist who has no idea what I have until October. Meanwhile I am so sick of being a waste of space I decided to scrub my walls today, and I only ended up getting three door trims done and barely made it to the end of the hallway before I was so spent I laid on the couch for 3 hours. UUUUUGH. I hate this. I am thinking I am so bad due to the heat. That is my guess. I mean, it's just terrible. I can't live like this.

Sorry I just needed to vent. I am just beyond frustrated with doctors, and people diagnosing me and telling me what to do to help myself. I don't know what to do. I have tried florinef, stockings, midodrine, and zoloft so far. Zoloft messed my intestines up so bad I thought I was going to need some sort of surgery or something. Sad since it was the most effective in dealing with my condition.

I heard the tail end of Dr. Grubb on the Dr. Radio on Sirius. I wish I could talk to him. It was the encore show on the weekend, though. He didn't really talk about POTS from what I heard. It was more fainting from needle pokes and pain. He did say one of his patients would actually have her heart stop during an episode. Also he said that spontaneous death can occur too. That was scary to hear.

[ajw4790]

Hi!

I wish things were going better for you! What kind of meds and treatment are you on currently? I know you listed some and no longer on Zoloft are you still on the others? What type of specialist are you referring to (all neuro)? Can your PCP help at all? Maybe they could help you try another SSRI etc. Can you see if there is another dr. that maybe able to help you somewhat close by?

How could they tell POTS from an EEG? That seems odd... NCS maybe, but POTS... (I guess lack of O2 to brain causing different brain waves?). And this dr. doesn't have any suggestions or help? I guess I figured if they have a positive test and suspect POTS (or diagnosed it) that they maybe helpful in treating it?

I wish I had more words of wisdom. I hope that you can find a helpful dr to sort out what is going on.

[Guest tearose]

Well, venting is good. I have been feeling nausea since lunch and I am having pain in my calf so I can't sleep. I'll sip some tea and share with you in case you are up too.

So sarct, it is good to get fed up from time to time. It means you want better for yourself, just be reasonable in your expectations. I hope you can feel comfort to know that you are not alone in having terribly rough mornings. It takes me an average of 4 hours to get my blood pressure up to adequate function levels and be ready to start my day. It is not like I am in bed. I get up around 7, and I too need to hydrate and wash and compress, by the time I'm done it is 11 and time for a snack. It is hot and humid and it adds to the physical drain on our body.

I can't tolerate medications so I do use compression, water, electrolytes, rest, seat cane and time speaking with friends. Can you be gentle with yourself and not worry that you aren't as productive as you use to be? You sound like you are your own worse critic. Just remember that it is better to have you functioning a bit slow and steady and not to have you crashed and burned out. The heat will be around a bit more and you don't need to burn yourself out right now.

I hope the sadness you are feeling will pass soon.

best regards,

tearose

[pat57]

I have had BP like yours and I was weak and lethargic. I think you need to water and salt load to get that BP up.

good luck

[MomtoGiuliana]

He did say one of his patients would actually have her heart stop during an episode. Also he said that spontaneous death can occur too. That was scary to hear.

He must have been referring to a condition other than POTS.

Hope you feel better soon. I have been there. I know how awful it is. I am sorry you are having trouble getting the best treatment.

[sarct]

thank you for your kind words and advice. I feel better emotionally today. I really am the type of person who usually goes at something full force. When I start something I don't stop until I complete it, and I really just get frustrated when I can't do the things I need to do. I have really had to work on making the expectations of how my day should go realistic. It's just I have so much I want to accomplish. I have scaled back cleaning my house, and now hubby has signed on to wash dishes for me since standing for long periods (any period these days) makes me feel sick.

I will write up what the report of my tests revealed.

Thank you for requesting ambulatory electroencephalography on Christina. She is a 30 year-old woman with recurrent spells of orthostatic presyncope with altered responsiveness and involuntaty movements. She is taking no mediacations known to affect the EEG.

This is a 24-hour video electroencephalogram recorded from 2/20/2008 through 2/21/2008. The recording was performed with 16-channel bipolar connections using standard lead placements and and reviewed in a logitudinal bipolar montage. This recording was performed at sampling rate of 200 per second per channel. EEG was recorded at the direction of pushbutton following each event. EEG was additionally stored at the direction of a computerized seizure detection algorithm, automated interctal epileptiform activity detection (spike detection algorithm), and timed EEG samples. Background EEG was sampled throughout the night every tem minutes for 20 seconds. Time-locked video was recorded along with the EEG

Summary: This was a very good quality study. The awake EEG contained a very well-developed, well-modulated, symmetric, synchronous, reactive, posterior dominant 40 to 60 mcv, symetric vertex waves, K complexes, sleep spindles, and slow sleep waves. The patient had a total of four pushbutton events. These were described as mild spells of lightheadedness without altered conciousness and abnormal movements which accompany her more severe spells. Video revealed that each of these events occured immediately upon standing. No abnormal motor activity was seen. 'There was no significant change in the EEG activity beore or during the symptoms. She had a resting sinus cardiac rhythm of about 70 beats per minute while supine which increased to 110 beats per minute upon rising during these events.

The day I had the test done I had only mild episodes. Nothing to write home about, So I wonder what a full on episode reads. Also he had the privelage of testing me while in the midst of an episode. He had me do the lay down stand up test and when I stood up I had an episode and he kept my upright (basically I was like laying on him while he took my BP and heart rate during it). It was killing me to stand there with all my weight on him. When I was able to sit I was sweating buckets, and had the worst headache of my life. My BP went down to 65 over 38 and my heart rate went to 156. This is the second time I had an episode monitored by him. the first one I am not sure what the numbers were but they were not as bad.

I had an appointment to see Dr. Gilman. I got his name from the list here, but he had to have surgery and is out for six months. The associate of Dr. Gilman I saw was really concerned about my low BP. He asked how far I was willing to travel to get treatment, because there is only one person to see in this country for what I am experiencing. He apologized for not having answers for me yet, but ensures he will find help for me.

Meanwhile I wait. Sigh!!!

I am not taking anything to treat me since going off the zoloft. I was pregnant and had a miscarriage and we are in the process of trying again. I drink a gallon of water a day @ 145lbs. I am 5'7 arge boned frame so I am sure the amount of water I drink is sufficient. I add electromix from whole foods to one 30oz glass each day since I don't care for sports drinks. I have sea salt from all over the world. I have sent good money on good quality salt, because I adore salt. My hubby often jokes I am trying to cash in his life insurance by killing him with salt. lol I like to cook and can't do much these days. I feel guilty for not making the meals I use to. I feel like I am putting my whole family at a disadvantage. My son suffers, because I can't take him to the park lately or play in the backyard or go on walks. These are activities we use to enjoy. I was riding my bike, but since the humidity and heat kicked in that is out. No more of that. I think things will improve once the temps drop. I think that is my biggest problem.

I keep having swells of heat like a wave of it wash over me when I am sitting or doing anything. Like I feel my temp rise and then fall in a rush, my heart surges, and I am just so tired. I feel like I am walking through life with gravity boots on. Every movement is taxing it seems.

[Caprice]

Sorry everything is so hard right now. Your symptoms sure sound like POTS to me...FYI POTS can make you process things slowly i.e. "brain fog". I have an engineering degree but no longer work. I can't balance my checkbook w/o a calculator. The brain fog even shows up on cognitive testing. My cardiologist says it has to do with not having the correct bloodflow to my brain. Whatever you do don't get overheated. Use a neck coolie if you go outside with your kids. They have saved me when I am in the heat. You can buy them in sporting goods stores or even Walmart. But the last Walmart one I got leaked the gel out. Good luck.

Caprice