briarrose

I don't know the correct answer here. I know for me, I can over-react to a situation. Emotions hit me hard and fast. I've have had to spend the last couple of years learning how to deal. So as far as my coping mechanism, I have to put things out of my mind or there are times that I can't function because I'm so paralyzed by my reaction. Unfortunately my family and friends don't understand any of my reactions. From beginning to end. It sometimes seems cold but that's how I have to cope or I wouldn't make it at times. I absolutely hate depression so I will do anything at any cost to avoid that problem. That includes just completely writing off a problem or situation. I have to be this way. It might not always be dealing but it works. Hope it never comes back to haunt me.

Has anyone experienced head or head/body swaying back and forth? I've noticed sometimes when I'm sitting that my head just starts bobbing. I can't find anything on the internet about it. I'm not sure what it is called medically. steph

Deb ? Was just wondering if you?ve had any testing for the muscle issue and what medications did you take? Do you know if your potassium was low? I?m struggling with brain fog, so I can?t remember what Dr. Grubb said about why this occurred. It will probably come to me later. EM, Mighty Mouse & Sak ? I guess I should have given a little more information. I work with several doctors and for the last year I?ve been trying to educate them about POTS (the ones that will listen.) However I know how the ED docs feel about things like CFIDS and Fibromyalgia, most of them don?t really believe that they are a true diagnosis. Last week I was in a discussion with one of the older docs and we started talking about chronic fatigue. He started right off with a laugh and prove it to me attitude. I don?t have proof, just like many of the things that we go through with POTS; we don?t have lab/diagnostic tests to prove what were saying (symptom wise.) I told him that he was wrong. He said, ?Convince me.? I said that I was conceding for the moment and would leave some documents in his box. I?ve since talked to one of the people that run the CFIDS group in my city and she provided me with some great articles. And encouraged me with some publications that will be coming out in the next six months, that will be extremely beneficial to CFIDS patients. Anyway, thanks for everyone?s time and response. steph

Are you wearing an event monitor for a length of time (weeks or month) or a holter which is normally 24-48 (continously recording?) Usually when they put a monitor on you, their more interested in what your rhythm is doing. As far as your heart rate, 60 - 80 is pretty normal for most people, although most doctors will tell you that 60-100 is the guideline of normal. If you are/were a well-trained athlete your pulse could even be 40-60. My heart rate has been in the 50's lately, in the morning - I think due to my beta blocker. When I was on toprolol it would drop in the 40's and I felt horrible. Lately my blocker wears off by the end of the day and I'm easily 90 - 120. I'm orthostatic and am having pressure problems. What I'm trying to say is that there can be many factors to your pulse and blood pressure. But usually the doctors are more worried about what your heart rhythm is. I'm currently wearing a king of hearts monitor because I've been struggling with very uncomfortable flutters that sometimes take my breath away. Curious, what is your blood pressure when your heart rate falls?

I've had dark circles under my eyes since I was a little kid, look just like my grandfather

This question ran on the NDRF forum last fall too. There were many responses. It was titled in search "how many of you have been nurses" http://216.149.163.247/ubb/Forum1/HTML/004884.html

I have three unrelated questions. 1) Does anyone else experience severe muscle cramping, spasms or after your muscle have been in a spasm for so long it starts to burn? 2) Has anyone experienced Mitochondrial disease and what are the symptoms? 3) What do you say to someone to make him or her believe that CFIDS really exists? Especially if it?s a doctor that your trying to persuade.

Lexapro gave me the worst headaches, I couldn't continue taking it.

I saw Dr. Grubb a couple of months ago. I flew from Oregon by myself to see him. I've experienced some bad symptoms, but I managed because I had too. I went 2 days early and stayed in my room and slept. I took some snacks and extra water to keep in the room in case the restraunt was closed. It's important to drink plenty of fluids, increase your salt intake, get up and walk around in flight to stretch your muscles. Write down everything you want to say well in advance of your appointment incase your tired from the trip or just plain experiencing that good ole' POTS brain fog. Appreciate your hubby going with you and that your not in it by yourself. Take notes during your appt. Make two game plans, one now and a back up in case the first one doesn't work, as far as treatment of your current symptoms. The Hilton is great there! http://www.hilton.com/en/hi/hotels/index.j...ctyhocn=TOLTHHF

I can?t guarantee the accuracy/reliability of some websites listed below. Just wanted to share. Red Wine and Alcohol Red wine is frequently cited as a headache trigger, because it contains tyramine, a vasoactive amine. Research now suggests that phenols, a type of flavonoid found in red wine, are the real headache triggers. For many people, however, drinking any kind of alcohol can provoke a headache. For migraine sufferers, other serotonin-depleting compounds found in beer, whiskey and wine may be the culprits. And, according to Newman, even a sip can be enough to trigger a headache in susceptible people. But anyone who drinks too much alcohol can bring on the well-known hangover headache, which is caused by dehydration that depletes fluids around the brain and causes painful pulling on the brain lining. If you would like to read more from this link http://www.migraineaway.com/article_mig7.htm more about wine and migraines http://staging.winebusiness.com/html/SiteF...1/BM119644.html vasoactive amine http://users.bigpond.net.au/allergydietiti.../fi/amines.html http://www.midwconfimmunol.org/Midwinter00...ters/khare.html Tyramine (found in wine) ? triggers headaches http://www.medhelp.org/glossary/new/gls_4276.htm http://www.headaches.org/consumer/topicshe...s/tyramine.html

Happy Birthday Sue! Enjoy yourself immensely!

I like to drink socially. Wine usually makes me very sick, it triggers migraines with vomiting and hypotension. I have to eat and hydrate normally before I drink. I can't drink more than 2 or 3 drinks when I do drink or I get very ill! I'm sure everyone is a little different. steph

There is a wide range of pressures. How do you feel? If I get below 100/, I know it. If I drop below 90, I feel really poor and usually need fluids to be given intravenously. I can't stress enough blood pressure depends on how you feel with it! Talk to your doc about it. Beta-blockers can have a huge effect on pressure and heart rate. Some people have to try different beta blockers until they find a brand and dosage that fits them.

I second what Nina and April said. You need to work on getting a diagnosis before you do too much with your diet, especially adding sodium. If you don't need it, you don't want to overload your system, it could make things worse. You should spend time reading some of the websites that Nina suggested, it can be very beneficial, especially to take to your doctor if he/she is unfamiliar. Heart rate/blood pressure. When I was first diagnosed; I only had the increased heart rate - up to 160 bpm. I didn't have any blood pressure problems until last year. Now I have lows and highs. Each person is so individual and what occured 6 months ago might not be the case now. If you think you have some sort of dysautonomia it would behove you to find a doctor that is familiar with the autonomic system, otherwise you might end up wasting your time, money and sanity. steph

It was such a problem for me that my doctor tried an arm splint on me, it didn't help. The numbness and tingling is better now, but I'm not sure if it was one single thing that helped. I think it was a combination of increasing my blood volume with epogen, IV iron and neurontin. These three things have improved several of my symptoms. I take other meds too, fluid and salt intake increase. steph

I apologize because I need to make this short but I just wanted to say hang in there! First of all I know that this illness can do strange things to your nerves. I have read that recovering drug addicts (years after even) can develop different problems, such as neuropathies and skin sensation disruption/burning. I suggest that you consult a drug counselor, so they can back up what I'm saying. I would also maybe consult Dr. Low's group at Mayo regarding this issue. I suggest that because several studies have been done at the Mayo clinic in MN regarding different kinds of nerve problems. So find someone that can back you up in your problem and support you the way you need to be! steph

I would like to share mine, which everyone is probably familiar with. One of my children gave me a plaque years before I was ever sick and I still live by it, it sits by my bed and sometimes gets me through a crisis. It's the Prayer of Serenity God grant me the Serenity to accept the things I cannot change. Courage to change the things I can and the Wisdom to know.....the difference.

I like Dr. Grubb, I travel from Oregon to see him. He is affiliated with the Medical College of Ohio in Toledo. good luck

I have not been diagnosed with this problem. My daughter has been having stomach problems for the past two years. I’ve taken her to several doctors searching for answers. Recently I took her to an allergist who skin tested her and said that she is allergic to wheat and peanuts. So we’ve put her on a gluten-free diet. http://www.celiac.com/st_prod.html?p_prodid=662 http://www.celiac.org/

I worried about it being fatal in the beginning too, but was reassured that POTS is not. Beta-blockers, most of us find it to be a necessity to take beta-blockers to keep our heart rate down. I know that I can’t tolerate standing without it. You usually have to experiment to find the right one. Many of us are chemically sensitive and need just minimal dosage. The last part of your question/statement – I don’t think that’s quite the way it works. POTS is not necessarily a heart problem do to a blood pressure problem. In fact there are many people that don’t experience the swings in blood pressure. The blood can tend to pool in the extremities, usually the lower extremities. Here let me provide you with a weblink that explains it better than I can: http://home.att.net/~potsweb/POTS.html http://www.ndrf.org/ http://www.potsplace.com/ steph

This isn't one of my common symptoms, but have had it. I know of other POTS patients that this is a huge symptom for them. POTS patients suffer from several different pains, CP definitely included. Neurontin sometimes is given for this too. Hope several others chime in.

Tonic water is usually suggested because it has quinine in it. It can be helpful if you suffer from some muscle cramping. steph

Welcome Melanie and Happy Easter. I'm glad you found us and I think you'll find that this is a great place for information and a lift me up! steph

I had the Chronic fatigue syndrome discussion with an ED doc Tuesday night. It didn't go well and I think I walked away losing that round. But I've personally read enough documentation to convince me so I'm hunting down web pages and printing them to leave in his box as proof. But most people don't believe in CFS, Fibromyalgia, POTS, etc. I tried to find studies done on Midodrine that could suggest the shaking, but no luck so far. I'll keep at it. I believe anything is possible though! Everyone is different and react differently. I don't think it's out of the realm of possibility that it was the Midodrine/ProAmatine. steph As for tremors, I have them daily. My hands are almost constant and my legs can get weak when I'm extremely tachycardic.

I don't mean this with disregards to anyones docs, but if you have a medication question; please call your pharmacist! I work in the emergency department and I take these kinds of phone calls all night long. The pharmacist has extensive training in meds and they have the resources to answer medication interaction questions better than most primary care docs. I know that my doc has given me things and it was the pharmacist who brought things to my attention. My 2 cents. steph