yikespanic

Jennifer, Can you tell me who you saw? I am curious to find a reg pcp in ne ohio area?

Kim

Thanks, When I first got sick and I didn't know what was wrong with me I was having horrible panic attacks that started every time my BP suddenly dropped. I had to drive through a portion of a National Park on my way to work and it was so horrible going through this secluded area every morning, I was sure I was going to die on my way to work and drive into a canal and not be found. I thought I was losing my mind! I logged on to a web site for panic attack sufferers and when I had to think up a screen name thats what popped into my head, first yikes (for I feel funny) then panic ( for the attack that followed) thus yikespanic.

Kim

good idea-

I adore your member name yikespanic.

I got a really good idea that I wanted to share. I have surefit slipcovers on my living room furniture and it is a source of great problems to keep them nicely tucked in between the kids and our dog. Well today I was looking at the pool noodles, those floating tube things that kids play with in the pool. Well I brought them in the house and cut them to the lengh of the back cushins of my sofa, loveseat and recliner. I pushed them in the space where the back of the cushions meet the back of the sofa. They keep the slipcovers in tight!!! And nobody noticed them missing from the pool. LOL I might buy a couple more to cut up and push in the sides by the arms. This was a daily thing I had to do and it really wiped me out trying to get them back on. Now they stay.

Kim

I had this distressing problem and it came down to my celexa that was causing it, and POTS was to. I wouldn't stop my celexa because it has given me so much more quality of life in all other areas. So my doctor added welbutrin slowly and it took a few months but I did notice a good improvement. She wanted to try and stop the celexa slowly and keep the welbutrin, but I was to scared to try it. I didn't want to go down hill pots wise or even take a chance. She said I can up my dose of welbutrin and see what happens, but I have not tried it yet. I'm at 150 mg and would go up to 300 mg. I might try it some time in the near future to see what happens. I would talk to your doctor about it, it felt a bit uncomforable, but it helped that I talked to Bev, Dr. Grubbs NP, she was really understanding.

Kim

http://www.openeyepictures.com/underourskin/

Did you hear our President Bush admitted to having lyme in Aug 2006! Maybe more funding and new diagnostic tests in the future???

I had a similar pain at the base of my skull where my spine entered my head, it persisted for months before I was diagnosed with pots. My left eyelid had a constant twitch that drove me crazy to. These were two of the few symptoms that led me to be tested for lyme. Both are common in lyme, as were the pins and needles in my fingertips and painfull joints in my hands and the swollen area at the back of my leg behind my knees. Just thought I'd mention it cuz I saw several docs at the cleveland clinic and no one ever asked me if it could be possible I was bitten by a tick or even mentioned lyme and I ended up having it. It is believed that my pots was caused by the lyme and that was the cause of why I was so sick right before my pots came on.

Kim

Colleen,

I am so happy for you! I hope your on your way to feeling yourself again.

Kim

Colleen, one more thing, there is a vitamin called

Cerefolin that is a folate that passes the blood brain barrier and helps with memory (hopefully) Dr.

Grubb started me on it and I am trying it. (just a thought) It is by presription.

Kim

Hello Colleen,

I can tell you I know exactly how your feel. I had a hard time when I was first diagnosed with POTS, my anxiety/PANIC attacks were dreadful. I also tried toprol and florinef and also lexapro and a few others. Finally Dr. Grubb started me on a itsy bitsy dose of celexa (5mg) and then added Welbutrin XL 150 mg a few months later. I can tell you the first week or so on the celexa was a bit wierd. I had a very dry throat, felt strange and had very vivid dreams. I kept in touch with my doctor and he comforted me that this would pass and you know it did. I now feel so much better, anxiety wise and panic wise. I have not had a panic attack in many months and my anxiety has gone to normal. I am so glad I hung in there and rode it out. I still carry my bottle of xanax in my purse for an emergency but so far I havn't had to use it. I hope all goes well with this for you. Everyone is different but hopefully the med will give you relief from the anxity. No one knows how horrible it can be unless you have been there.

Take Care,

Kim

Just thought I'd add my 2cents. I am one of those who underwent approx one year on abx treatment for lyme. I decided after careful thought and many hours of investigation to the pros and cons. I can say the doctor who treated me was very through in his care. I had monthly blood testing to check for any adverse reactions to my antibiotics and saw him once every month for check up. In the beginning of treatment I experienced horrible herx's. These became a pattern that returned approx every 4 weeks. Then I slowly began to see improvement in some of my symptoms. I was never kept on the same antibiotic for long periods, they were changed as to not risk them not working in the future. Early this year after a couple of good months, and no return of most of the symptoms we are taking a break to see if they are gone for good. The improvement in my POTS has also been a good sign. I may be left with POTS, but I am no where near as bad as I was 2 years ago. According to the CDC my Western Blot was inconclusive, I did not have enough of the possitive bands to be diagnosed as lyme. I did have bands common with lyme. It all has to be someones decission. I am glad I did it, and do not regret it in any way. I would hate to think if I had become worse and possitively had lyme that I didn't at least give it a try.

Kim

Just thought maybe someone else might have an appt on Thursday, If you do let me know, I'll look for you.

Kim

just a note, be carefull, some also contain pottassium and to much is not good. Check with pharmasist or your doctor and read them the label.

Kim

hi, I am one of the ones to have lymes also. I had been on antibiotics for one year up untill a couple of months ago. It was sometimes hard to tell if my symptoms were pots or lymes related and a few months ago I had a period where I felt my lymes symtoms had abated. My lyme doc took me off antibiotics for a trial period to see what happens. It's been a couple of months and I am almost afraid to say the lymes is gone, for fear it will come back. I have had several weeks now where I am beginning to feel almost myself. The pots symptoms flair up but it is nothing like when I was really sick. If you want any info on where I went just pm me. I see Dr. Grubb for my POTS, if there is any way you can see him ,do so, he is the best there is in my opinion. Take Care

Kim

I have been doing something not as cold, After I take my shower, which has been a bad experience for me as it makes me more symptomatic, especially right after. I turn down the water temp slowly to get used to it until it gets to the point that it is as much as I can comfortable stand and stand under it untill I am cooled off and then some! At first I couldn't stand it, but now after doing it since last summer I kinda really like it. If I got to uncomfortable in the summer I'd jump in the shower and cool off. The faster you can change the temp from warm to cold the better. The shock raises my bp and I get the benefit of cooling off.

Kim

hi, My panic attacks began around the same time as my POTS symptoms so I think they were conected but not totaly sure. I tried Klonopin, began with a very small dose, about a quarter of a wafer, and I still felt to woozy to drive or do anything else safely. So I stoped it. I carried Xanax with me and if I felt a panic attack comming on, I'd take a quarter of one, and then another quarter if I needed it. It works wonders when a panic attack comes on out of the blue and your driving or something. It stops it in its tracks and helps to calm you down. A trick to taking it so it works immediatly is to let it dissolve under your tounge. It tastes horrible but works much faster. What really helped was when Dr. Grubb put me on celexa. We started at 5mg for a few weeks, and went up to 10 mg. My panic attacks and anxiety totaly went away! So did the rush feeling I was getting. It had a bit of sexual side effect and he added Welbutrin XL 150mg to be taken with my celexa. Both drugs worked fine for me. The first week or so on the celexa I remember I had some odd feelings, but Dr. Grubb said that ment it was working and the odd feeling would subside, and it did. The key was beginning with a very small dose and working up to what worked for me. I am so glad I stuck it out, life has been so much better without feeling those horrible panic feelings. I was almost housebound with fear of having one while driving or being out. I hope you find something that works for you. Take Care, Kim

I had taken what I think was nortriptyline, and it lowered my BP so badly I couldn't stand up without blacking out. I could still hear what was going on and as soon as I was on the floor I started to feel better but It was a terrible med. I wonder if it is relataed to amitriptyline, I think they are both tricyclics? Anyway when Fouad found out my primary doc gave it to me she was furious. She said POTS patients should never take it because it has a high chance of lowering your BP and ours is so low anyway. I'd double check with your doc and ask him about the BP side effect.

Common side effects of using amitriptyline are weight loss or gain, drowsiness, nervousness, and dizziness insomnia. Some rare side effects include tinnitus, hypotension, mania, psychosis, anticholinergic effects, heart block, arrhythmias, extrapyramidal symptoms, bone marrow depression, and hepatic toxicity.

kim

Jacquie,

I am coming to the end of my first year of college. I attend our community college and what really helped is the ACCESS Office. Dr. Grubb wrote a letter explaining my disability and I receive extra help through the colleges ACCESS Office. They made sure the college police and safety dept knew me and of my problems. They made a special meeting for me to meet them and explain my concerns. If a room is to hot they can try to make it cooler for me, if I have a bad day and can't walk from one class to the other someone from the safety dept will come with a wheelchair and take me back and forth (I haven't had to be so far), I can be late to class, bring snacks, water, leave early, and come and go as I please if I need to step out. I can take my tests in the learning center instead of class so if I am not feeling well I can take it anytime during the week of the test. Since POTS affects us cognitively sometimes I get double time during tests. So if a math test is for 1 hour I can take 2+ hours, and take it in the learning center. The college ACCESS office also has tutors that have been very helpful. Last semester I took all my classes at the college, summer was a bit problematic, as some rooms were hard to get cool, and it's just harder in general in hot weather. This semest I took one three hour class that meets 2 days per week, and 2 online classes. This helped taking online classes but as other have already said, you have to be disaplined with your time and it's a bit harder than campus classes. I had all kind of worries but it has been a good experience.

Kim

Hi everybody,

I've been mia also for awhile. I'm in the last couple months of my first full year of college, and after doing my everyday basics and then school and then homework and papers I have been literaly exhausted. My 20 year old daughter is also in her first year and we took almost all of our classes together this year and it REALLY helped when I couldn't drive or just plain felt bad and it made me feel better to know if something happened, she'd be around. I also took classes online so that helped to. It's been rough at times but it also has been a real good feeling of accomplishment and even that somehow makes me feel better, plus I surprised myself so far with a 3.5 GPA.

Kim

Hi Pat,

No your not the oldest, I am 44 and I was diagnosed Last year with POTS by Dr. Fouad also. Right now they think I got pots after a virus in Dec of 2004, and that virsus was possibly LYME disease. I see Dr. Grubb in Toldedo once every 6 months now, and Bev his NP on the other 6 month appt, thats 2x per year unless I have a problem that they can't help with over the phone. I can tell you Dr. Fouad is excellent with diagnosing and testing, the best says Dr. Grubb, but she is not their for the long run. When I went to see Dr. Grubb he changed my entire treatment plan, and it has made a difference for me. Dr. Chelimsky at University Hospitals is also reccommended by many, I haven't seen him because he is not on my insurance plan, if he was I would try to.

Kim

I became very depressed several months ago, and did not connect it to the fact that I was on beta blockers. It began and progressed slowly so before I realized it I was feeling pretty bad. I was taken off them by my Dr. and began on celexa for my pots. Within a few weeks the feelings of drepression began to lift and I began to feel better emotionaly. I can't tell you that this is the case for you, but I would discuss this with your doctor. I hope you are feeling better soon. Take Care

Kim

I've only been on it for a couple of weeks now, and haven't noticed if it has started to work or not? I hope it does. I did just look up some info on it and it's not supposed to be a mao:

Bupropion is a selective catecholamine (dopamine and norepinephrine) reuptake inhibitor. It has only a small effect on serotonin reuptake. It does not inhibit MAO (i.e. is not a MAOI). The antidepressant effect of bupropion is considered to be mediated by its dopaminergic and noradrenergic action.

I have noticed my heart races again since cutting down on the celexa, and I hate that feeling!!!!Especially when I try to go to sleep. It will calm down, then if I need to roll over in bed it starts up again. I hope it works for that.

kim

I am in the process of weaning off celexa, mainly because of it's sexual side effects. I am now on Welbutrin XL while still cutting my dose of celexa slowly over several weeks. My question is:

I have known that ssri's help with POTS, it has with mine. Welbutrin isn't a ssri? How does it help and has it been effective for anyone?

Ever since I had to change from the generic celexa (because the company no longer produces it) and changing I have felt worse. I am in the process of writing the company and begging them to make it and tell them how it helped my POTS greatly.

Kim

I know this isn't POTS related but I thought someone might know of a good gastro in cleveland/parma or surrounding area. My daughter has IBS and sunday she came home from work after having a real bloody stool and feeling quite unwell. We went to her doc at the Cleve Clinic this morn and they referred her to a gasto, the problem is that they can't get her in untill FEB!!!!! I am so sick of CCF. I asked around and no one I know goes to one. I hate to just pick one willy dilly out of the phone book? She had one at the cleveland clinic for years, but because she's now 20 they said the peds dept wouldn't see her any more. And because she's new to the adult dept she's considered a new patient and has to wait. I could just scream at them. (just needed to vent)

kim

I have become very tired and fatigue, more so than usual since beginning the generic welbutrin 2 weeks ago. Any one else have this happen, and does it go away after awhial.

Kim

Just though it might help someone out to know I canceled an appt for this fri at 11:00. Maybe it might still be open.

Kim