laila

Welcome Amber. My computer's going nuts with replys today. The support here has been lifesaving for me too.

Hi! I finally had a tilt table today........and he said I had POTS, the kind where blood pressure drops and pulse goes too high. 10 years of this and finally someone found it! I know there is no magical pill, but how have people done with Midodrine? I was prescribed 5mg 2x a day, and to see Doctor next week. He had another patient ready to tilt. I am a bit confused because sometimes my blood pressure is high.....but he said he wants it to be higher, than a normal persons. I can't beleive I had to self diagnose myself with this wonder ful site and then finally found a doctor who is familiar with it. He said to add salt too. I remember a previous post where someone had a recipe for "homemade gatorade". PS. I think he said 3 times a day but on the RX it says 2x a day? Will have to call. I am actually happy to have a DX, I don't feel lilke a medical freak alien anymore. I am currently on Xanax. How do you print all the little things at the bottom of your posts like poems and medications, tried, etc. Thank you anyone!

Oh my, these have been by symtoms too....for years....I wake up shaking and heart pounding and it takes a long time for it to all settle down, as well as tired, dizzy, yuky, . It does get slightly better on weekends when I can sleep in but even then it happens to lesser degree. Im laying there telling myself I don't have to get up, and if I do deep breathing, or sit in bed balancing my checkbook, it gets better. I keep telling my husband I feel like an alien I just want to wake up and feel normal again. I want to thank this website for saving my life because if I hadn't found it i would doubt my symptoms even more....I could cry right now cause sad as it is that we all have suffer, some worse than others, they are tears of joy that sharing everyone's experienses has let me know I'm not a total freak....and I finally found a doctor who seems to care too. I go for my first tilt table Monday, and now am nervous. Have to be there at 7:00 am. That will surely put me in a big tizzy. My body doesn't like being up till 8:30 or 9:00 even if I go to bed early. At night I feel fine, usually. I am on Xanax XR now.

Thank you for undstanding! I will update on test results.

Ok this is really happy news for me. I have had CFS and Fibromalgia and Anxiety problems for 10 years and have alway felt like something else was not quite right. Especially in the morning I feel so weak and shaky and sick if I have to get up early. Anyways I have had a lot of tests done, been to 2 cardiologists, 3 neurologists, actually found out about pots from this website which I stumbled across somehow. And had to push different primary care docs that kept leaving our HMO for more tests, finally got one to send me to a neuro then another doc said oh you can have that done right in Annapolis instead of up near Baltimore. So after going to the cardio for 2nd time and having an echo, event moniter and ekg she said sinci I don't faint I didn't need one (sorry, I'm talking about a Tilt Table test) I was so discouraged I just gave up on it all. Well then last year my husband lost his job and luckily found a job with insurance, I couldve stayed with the group HMO I was with but decided to try a doctor who ran his own practice for some continuity in care. I went in with all my bloodwork and notes, specialists seen, etc......His first response was "Oh wow we have to stop running to all these specialists!" I was in shock. I mentioned that one doctor had wanted to do a tilt table and he sort of says well that wouldn't really matter much anyway....well I was once again disgusted and felt rushed right out because I think lunch break was starting for them. He didn't even make one helpful suggestion about possible theatments. I finally decided to look for a female doctor to change to because last week I started waking up with hot flashes and palpitations. So I hunched over the manual and called the nearest ones....either huge groups or busy signals....so I went over to the next county and found a group with three doctors, one a woman, and hesitantaly asked the receptionist if she was nice. They said Oh yes she is a good caring doctor. Well the day of my appointment was horrible. I had to take my daughter to school late then was watching my 2 year old granddaughter and had to go to the bank, then pick up daughter from school and then take her to work then drop off Cadence, and then make it to doc. Just doing one of those things on a bad day would do me in. I had to take 3 xanax usually i take 4 a day 2 being at night. Just to get there. Well funny thing she walked in and the nurse had forgotten to do my blood pressure, which she tried to take and went whoa, your pressure is all over the place.....got a top reading of 150 and low bottom reading.....anyway Im rambling...she actually spent time with me.....she said you are a mess and we will try to figure this out. Just by looking at me! And I bought in some info I had found on the internet about Chronic Fatigue treatments to look over with her, she said that is a good idea! Well we never made it to that point, because I was there too long, she does want me to come back to work on that later. I did end up having a fever so maybe thats why I felt so horrible that day. I think I had a sinus infection coming on. Well she said I need a tilt table, gave me antibiotics, wants a 24 hour blood pressure moniter done, which I can't find any one who can do that with our insurance yet. There was a cardio doc in building and had an appointment within a week with him. I was much more calm with him, and he also recommended tt test, already scheduled for next Monday! I cannot believe this. I handed him the POTs syndome symptom list and he knows of Dr. Grubb and Dr. Bell. I feel like God finally heard my prayers. Even if they find nothing, at least I will know, and they said they like to take time with their patients. I left in tears of joy. Sorry this is so long, but if anyone lives near the Maryland area this is the best I've seen in 20 years. The Primary care doc actually commented that the cardio I had seen in the past was one of the best in the state....yet she failed to see throught the lines.......if anyone else needs help i would be glad to refer these wonderful people. Don't give up hope, there are doctors who care!

Hi, I read in a recent post you had mentioned a medication you took instead of a beta-blocker because of asthma, and I can't find the post now. I was given beta blockers for rapid morning heart rate, but my asthma is real bad now and I am afraid to take bb. Thank you for your help.

Hey! I think you need to go to a doctor asap I have been on xanax for panic and anxiety for years. I am 46 and started in the 20's with this problem. Generalized anxiety disorder and panic attacks. You don't have to live like that! You sound so miserable. please go get some help. I didn't even know what anxiety and depression was at your age, you seem very aware. There are a lot of things to help besides meds, but sometimes they are necessary. Good luck!

My daughter and I both tried Claritin last week and both had bad reactions. I have always been ultra sensative to meds and do well with Zyrtec, a prescription allergy medicine. Anyway I had horrible nightmares and woke up in a horrible panic state and then my daughter said her legs were so stiff she could barely walk. I grabbed the pill book and it did have pain in legs, muscle pain, as well as other icky side effects. I gave her tylenol and sent her to school as she has missed so much already this year, with instructions to call me, if not better. Well she did get better by 2nd period, though she said she felt like her vision was blurry and was sleepy till then. I of course felt horrible all day with nervousness it is a 24 hour pill. We will never take it again!! I have never seen her have any kind of reaction to a pill such as that. Whoops! Somehow my first post disapeared and then reapeared after i rewrote it. Sorry about this I can't get it off.

My daughter and I took Claritin once last week and both had bad reactions. I had horrible nightmares and felt extra shaky and weird the whole next day. She who is 14 woke up and both her legs were stiff and she could barely walk!! I grabbed the pill book and it did say it could cause muscle cramps., as well as other symptoms such as nervousness, etc. It was freaky! I gave her tylenol and made her go to school with instructions to call me if things didn't get better. She said she felt as if in a fog till 2nd period. Her high school has 4 period days. And in P. e. they ran the mile and then she felt better. I will certainly never take it again. I do have good results with Zyrtec. For some reason my pcp gave me a script for the Clarinex I don't know why. I am terribly sensative to medicines but I have never seen my daughter have such a reaction. And it's a once a day pill so I had to wait for 24 hours to feel better. Good luck, though, everyone is different.

You Poor Thing, It does sound like you need a ttt test, if you read my post from yesterday I have some of the symptoms. I have had a "virus" of some kind all week, and by heart rate has been way up. I barely made it through the shower the other day! Did the Gi test you for ulcerative colitis or Chron's disease. Did they say anything about Irritable Bowel Syndrome? Have they ever tried Xanax or Klonopin? Or a beta blocker to slow your heart rate. I know it is hard to get help. One doc wanted to do a ttt, but because of insurance reasons I had to go to a cardiologist, who did tests, and another neuro who said I didn't need one, because in his office I was fine. Anyway i rambled as long as you did, i know how frustratring it all is. Good luck, keep trying, try the good doctor list. Good luck! PS. I don't know how my name is on the post above, something is going crazy with my computer today, sorry about that everyone.

Hi, I just wanted to tell you something "interesting" about a Doctor we both saw, I had asked your opinion several months ago, and it might be better if you emailed me at lailavia@aol.com. I don't want to mention a bad experience on the forum, because everyone has different opionions and reactions.

Thank you tearose, I just remembered my ENT told me the same thing about Biaxin being anti-inflamatory, and prescribed an Nsaid, which I do not want to take now because of the bad side effects, etc. I had just been put on Vioxx and three days later it was all over the news! And now they're saying advil may be bad too. Well hopefullly this doc will prescribe the Biaxin. I once saw on a chronic fatigue board where a Doctor recommended six straight months of an antibiotic. Good night.

Hi all! I live in Maryland and have chronic fatigue and fibromyalgia, I highly suspect I have pots type illness too, as my blood pressure and pulse skyrocket (well for me) to like 130/110 with pulse 90 to 120, when I first wake up. It usually falls after that morning "rush". I just had a cardio workup and she does not feel I need a ttt test. My first Neurologist wanted to do one as well as sweat test, but that did not work out for various reasons. Futurehope if you are still out there, I need to tell you something. THe second neuro did the blood pressure test in his office and of course was quite normal there. I am currently only on xanax xr 4mg a day for my Generalized anxiety disorder and I used to have panic attacks out of the blue and always felt like the panic came from somewhere, like pots land, just out of the blue for no reason sometimes. Anyway last Saturday I was very tired and tried to nap, but woke up feeling bad. Usually if I get enough sleep I can function pretty normally for me. Anyway I have been trembling, shaking, and so weak, heart racing since then. I made a dr. appt for myself MOnday and in the rush to get there felt like my pulse was so high I could barely get in the building. I have had a low grade fever, and now feel also like i have sinus infection. I do like my primary care doc, she is new, but bless her heart keeps trying. She ordered some blood work (which has always been normal) and is going to refer me to a GI person because of frequent diarreha, and several bouts of stomach virus's this year. Anyway this is the worse I have ever felt I can manage to do basic light housework, but had to increase to 5mg of xanax which seems like so much!! Does anyone else take this much. She also prescribed lopressor which I am hesitant to take because I took Atenolol once and I couldn't sleep and I have copd and asthma and it makes me wheeze. Well I called for my test results, Thursday, she is on vacation, (it's a group) and no one has called back. I called again today and still nothing!! The appointment lady suggested I just come in Saturday. Anyway I didn't mean to ramble on like this. Last Sunday night I cried for an hour, everytime I get sick it seems to last forever, but this has really laid me low. The appointment lady said there were bad viruses going around that are lasting forever. I guess it will always seem worse for me. I just haven't felt this bad since after major surgery. Hopefully tomorrow the doc there will at least give me an antibiotic. Biaxin always makes me feel better. Another reason the pc doc is referring me for gi work, she said antiobiotics can help ulcerative colitis and maybe that is why I feel so much better. Funny thing, I had sinus surgery last year and still getting the pain that does not go away without antibiotics. The last time I went to the ENT guy with the pain,, he ordered a ct scan said I had no infection, basically through up his hands, then I was sent to an infectious disease doctor who ran more tests and everything is NORMAL!!!!!! I can't believe this. OH well. Thank god my unemployed son made dinner two nights in a row.He has a good heart but usually nitpicks and fights with me all day.. Ok that's it. I feel better. Thank you anyone for listening. Hope everyone has good weekend.

Hi! My doctor also wants me to start on this, I have been tried on many different anti depressants but could never tolerate any. I think I will try this. I am currently taking xanax xr for anxiety. Still tacky in am. These are two good sites to get info from, there seems to be alot of positive feedback for Cymbalta, go to http://depression.about.com. Then go to forums. It only takes like two minutes to join the site, has been very helpful to me. There is also another site I like at http://crazymeds.org. Very informative with a humourous side. Good luck!

Atenolol made my heart slow down but gave me insomnia and made me nervous physically. I am on xanax for GAD and panic and the beta blocker took away the calming effect. I also have asthma so I stopped the Beta Blocker. I was put on Xanax XR and my palpitations, etc. are so much better. I fianally found a Doc to properly treat the anxiety, or is it the Pots? They don't know yet. Good luck! PS Iwas having insomnia anyway so it could be that the beta blocker just made it worse. I am also very sensative to meds, but find that xanax is the most helpful at this point. Who cares if i have to be on it forever. I was in a contant state of anxiety for 5 years!!!

I just wanted to add that because I am still occasionally smoking, i did not quit. It sounded so stupid reading my own post. But I am still trying to totally abstain. Good luck!

Hi Mary, I quit (sort of) as I will explain. Last January. There is a good web site you have to go to. It's the only thing that really helped me. It is called quitnet.com and is a support group. You do not have to pay to belong, though for additional services you can pay. I am 45 and smoked since I was 18. I was dx with emphysema, chronic bronchitis and asthma. I got to the point where I was coughing non stop for an hour in the morning while trying to smoke! I couldn't go anywhere without haveing coughing fits, my 13 year old daughter was scared and embarressed and used to cry for me to quit. I was coughing so hard I cracked ribs and damaged cartilidge in my chest, one day it hurt so bad I couldn't get up. It was horrid. Well I did go to a hypnosis class, which personally don't think helped all that much. I had already circled the date. Well I did have the nicotrol inhaler which I used breifly but that made me cough too. After 2 days I cracked and had 1 cigerette then was very mad at myself. I think I cried the whole first week and stayed on the computer on the quit net support group alot. It is like this forum a place to vent and support, etc. I also had a brand new baby granddaughter to hold when ever i wanted to ease the pain. I think the longest I have gone was about 45 days, but I did break the original habit. Unfortunetly lately I have been haveing 1 or 2 on days I am very stressed. and if i drink beer i buy a pack. I am not happy with myself, but at least not waking up wanting one everyday. One of the most important things I have found is NOT TO HAVE ANY IN THE HOUSE. It makes it too easy to give in. Go to that website. There are such scary stories about very young people dying from smoking, it probably saved my life. I still have a cough but nothing like it used tobe ,. I wish i had quit sooneer!!!!!! You can do it. Set a day! It is such a releif to run out of the grocery store not wanting a smoke.

I have always done well with Biaxin, but you have to make sure to have a full stomach, esp. with first dose, or I was very nauseous. THen it makes me feel like a whole new person. As a matter of fact, I was on it so much for sinus infections before my sinus surgery, that when I am not on it I feel weak, tachy , shakey, like I can barely walk. (except around the house) I am also on xanax .5 mg 4 times aday and I found out that biaxin can prolong the effects of xanax in your body. THis I was told by a doctor. And tthey keep sending me back to my psychiatrist who will not change the dosage. After all the other docs keep saying it is anxiety! I am now going to a rheumaltologist, I saw an infectious disease doc, who is running some more bloodwork, because everything is completyl normal, of course, with all my bloodwork. I am going to a new psyc. doc next week, and a cardio the next week, and my pcp doc who is new is ordering a colonoscopy test. I have pushed really hard these past few months to get it through to the docs that something is going on I wake up sometimes with my heart racing and bp high. I cant stand it anymore!!!! I take extra xanax and somehow make it stretch out. I do have beta blocker but it gives me insomnia! I think the rheumatologist will prescribe ambien, he said to call if the the flexeril didn' t work, which that gave me horrible nightmares and tacky wakening. I feel like a big medical mystery. I have fibromyalgia and chronic fatigue, am getting a tt test to check for pots. I swear somethimes when Im having these "anxiety or panic attacks" i feel like I am going to die. THank god for this site. No one can truly understand. I also have problems with a lot of antibiotics and antidepressants. Levaquin was awful, there was one with the cramping and diarhea, and another that made me nervous. All these Docs are now trying to find out why I feel so much better on Biaxin. I think I need more anxiety med. but the last psych doc said 2mg a day is a big dose. Does this sound right????????????? Help!

Here is the web address for the site I mentioned above: http:www.co-cure.org/

I have had a real problem with sleeplessness. Recently I have pushed myself to get referrals to go see doctors. I am so far dx with CFS and Fibromyalgia, am actually going to a cardio later this month to set up the TT Test. Somedays I was so tired and spaced out and shakey I couldn't seem to concentrate even as to what to say when I Called!! I did go to the rheumatologist I saw 2 years ago and he prescribed Celebrex for ongoing and worsening leg pain. He also has me trying a muscle relaxant flexeril. Well I tried the Celebrex a couple days ago and is helping a little. But I did notice immediate sleeplessness{not even being able to fall asleep, usually I would just keep waking up} Last night I took the flexeril at 12:30 am and didn't wake up till 8:00am!!!I cant remember the last time I ever slept that long. I was tired I stayed in bed till after 1030 am. I am also on xanax .5 mg 4 times a day for anxiety. I have noticed today i feel alittle over sedated so will try cutting back on dosages but oh how blessed to finally sleep. He said to call in three weeks, if those meds don't help. and even suggested Ambien! I am getting ready to go the my 3rd new pyschiatrist this year later this month because of uncontrolled anxiety, Oh that's a whole other story of doctors not helping!!!! I am just happy I refound this DR. he at least seems like he will treat appropriatily. Today I have only taken 2 xanax I usually would have taken 3 or 4 by now. It has taken me years to get help. I walked out of my psychiatrists office crying last week. I have decided to quit going to ill informed or uncaring doctors. Keep trying! Do you have any symptoms of CFS or Fibromyalgia? THere is a good website with Doctor referrals for each state. I will find it and post it later. Just got a new computer and all my info gone. Good luck,Laila

That's really encouraging! I saw Dr. Khurana last month and am suppposed to have a tilt table, sweat test, and biopsy (nerve biopsy) on my feet. I don't even know if I have pots but the symptoms are there. I will keep notes on your progress in my "pots file" for my own future reference. I hope you got my email, regarding sweat test info. Good luck.

Nina, please tell your friend i will pray for her. That's the worst tragedy in the world.

Oh Nina, I hope you will be ok. Remember to watch for pupil dilation, etc. Concussions run in our family! I swear the only real injuries any of my three kids have had were head bumps. And I am such a worrier you can't really 'see" what the damages are. Just the other day my 13 yr old got whacked on the forehead with a mini golf ball which raised a lump! And talk about clutzy, I tripped in the house trying to run around doing chores and fell smack on my already sore arthitic knee. Just bring on the pain and damage dear world!! Now my whole leg is sore and I bet its messed up for life. Well at least I didn't break anything!!!! Good luck.

Hi all, Well I finally had my appointment with Doctor Khurana today. He was very nice and spent an hour and a half on my visit. He asked many questions and will have a tilt table test ordered, sweat test and "punch out" biopsy for the neuropathy in my feet. I think he was Implying that with a beta blocker and more xanax my symptoms may be controlled, but wants to make sure they are either neurological or "generalized anxiety", or both. I have so far been diagnosed with chronic fatigue, fibromyalgia and neuropathy, generalized anxiety disorder and panic by all the docs I have been too in the past. My feet do hurt really bad and I have bad bad morning episodes of nervousness and heart racing. He does want reports from cardio doc and pcp sent over, then will proceed. I am to call June 13 to get test dates. Well I feel like I am finally moving in some direction. He said if it was not pots then my anxiety needs to be more agressively treated. Well enough said for tonight. Good luck all!

What antibiotic did they give you? I get frequent sinus infections and some work, some don't, some give me bad side effects, etc, I have taken so many I probably am about immune to them! I don't think they could hurt because you have pots, but you would be surprised at the side effects even an antibiotic can cause. I have a prescription pill manuel (you can get at any bookstore) so am no longer baffled at the weird things meds can do. I am very sensitive to any medication. So thats just me, my husband doesn't take many meds. but he does not have the problems I do.