yuliya

I have tried B 12 injections for 6 months. I can't say that I felt any benefit from it what so ever. I can say is that my arm was constantly sore where the doctor did the injection. The needle they use is fairly large gauge and I formed some kind of cyst from it.

I'm not exactly sure how but I did find this: "Blood pressure medications -- In a clinical study of individuals taking blood pressure medications, including diltiazem (Cardizem), metoprolol (Lopressor or Toprol), enalapril (Vasotec), and nitroglycerin (Nitrostat or Nitrobid), CoQ10 supplementation allowed the individuals to take lower dosages of these drugs. This suggests that CoQ10 may enhance the effectiveness of certain blood pressure medications, but more research is needed to verify these results." That alone makes me want to be careful about adding it to my meds since I just started to take it.

Is there any kind of medicines that can help with the fatigue. I'm so tired most of the time I can't even do simple cleaning around the house. I don't have any changes in my BP only high pulse when I am up moving around. I just started metoprolol succinate to help with the heart rate, plus tons of gatorade and salt.

What is the connection with Ehlers-Danlos and POTS? I seem to have noticed that a lot of people on here mention they have been diagnosed with both. What is the symptoms of Ehlers-Danlos? From what I can tell its the flexibility, but what is the difference between good normal flexibility and abnormal. I am aware that there are several different types, but I am specifically thinking of the one that has to do with flexibility. Any help would be appreciated. Thanks Yuliya

I have been diagnosed with POTS today finally after searching all my life. My mom tells me that she thought that my heart rate problems have been around since she can remember. I really believe that it could be something you have had since childhood. Good luck with getting the correct diagnosis, we all know to well how hard it can be.

Thanks summer, I tried it last night, it was 50mg and it kept me up half the night. I also had more palpitations and fast heart rate at night, which is unusual mine is usually fast when I'm up and moving around.

Thats true, but I eat a lot of sodium to make up for that.

I am reading the side effects of this medication and it says that it can cause your sodium levels to drop(hyponatraemia)and cause heart beat irregularities. Now I was wondering how safe is it for someone with POTS or OI? Any one on this medication and how does it effect you? Thanks Yuliya

My husband had an awful time getting that stuff down, out of the two bottles he got down about 1/3 of one. The test worked and he never actually told them he didn't drink it all. Im sure thats not the best thing, but it made him gag so bad he almost got sick.

I really don't know. Hope you feel better soon. I get headaches a lot. sometimes daily. I also have leg pain, but I don't think its fibromyalgia

Thanks Julie so much for the heads up. when the doctor said "Im not sure that its POTS because of the late on set of the increase" I said "there was different types". Hopefully the resource he uses to finally diagnose me are good ones. I am half tempted to forward exactly what you just said to him. All I want is to finally know what is wrong with me. I'm so tired of always having palpations and extreme fatigue just doing normal everyday things.

So I thought my TTT was tomorrow, but thank goodness I checked my calender this morning and it was today. I was on the table for about an hour before the doctor walking in the room to start the test. My heart rate was around the 70 mark. When he walked in the heart rate jumped to low 90. When they stood me up my heart rate was around 110 mark, and it stayed that way for 18 min. all of the sudden just as I was think "oh well I guess Im all right" my pulse jumped to 158 beats at the 19 min mark. I felt terrible. My legs felt weak, my head was starting to hurt, my vision felt hazy. They laid me down right after that and my pulse came down to 70 beats really quickly. So I only made it about 20 min out of the 45 min. they told me I would have to stand there. After the test the doctor said he is glad we did the test, but he wasn't exactly sure it was POTS since it took longer then 10 min. for the spike to occur. Doctor said he would call me after he called a few other doctors. Any one have a similar experience please let me know. I thought right after this test I would have a diagnosis but once again I am left to wonder until the next phone call. So frustrating.

I was told by the nurse that all they do is put you a table and then stand you up for 10min. I asked if they would be any IV's and the nurse said no. I have never had one and I don't really know, just going by what the nurse said on the phone. Maybe she has no idea. I will let you know on Tuesday

I just found this on the American Hair Loss Association web site and the only reason I post the whole list is because a lot of the drugs on the list are used with POTS patients, of course not all the drugs. Hope it helps some what. Acne All drugs derived from vitamin A as treatments for acne or other conditions, including: Accutane (isotretinoin) Blood Anticoagulants (blood thinners), including: Panwarfin (warfarin sodium) Sofarin (warfarin sodium) Coumadin (warfarin sodium) Heparin injections Cholesterol Cholesterol-lowering drugs, including: Atronid-S (clofibrate) Lopid (gemfibrozil) Convulsions/ Epilepsy Anticonvulsants, including: Tridone (trimethadione) Depression Antidepression drugs, including: Prozac (fluoxetine hydrochloride) Zoloft (sertraline hydrochloride) Paxil (paroxetine) Anafranil (clomipramine) Janimine (imipramine) Tofranil (imipramine) Tofranil PM (imipramine) Adapin (doxepin) Sinequan (doxepin) Surmontil (trimipramine) Pamelor (nortriptyline) Ventyl (nortriptyline) Elavin (amitriptyline) Endep (amitriptyline) Norpramin (desipramine) Pertofrane (desipramine) Vivactil (protriptyline hydrochloride) Asendin (amoxapine) Haldol ( haloperidol) Diet Amphetamines Fungus Antifungals Glaucoma The beta-blocker drugs, including: Timoptic Eye Drops (timolol) Timoptic Ocudose (timolol) Timoptic XC (timolol) Gout Lopurin (allopurinol) Zyloprim (allopurinol) Heart Many drugs prescribed for the heart, including those known as the beta blockers, which are also used to treat high blood pressure, and include: Tenormin (atenolol) Lopressor (metoprolol) Corgard (nadolol) Inderal and Inderal LA (propanolol) Blocadren (timolol) High Blood Pressure See Above list of beta blockers under "Heart" Hormonal Conditions All hormone-containing drugs and drugs prescribed for hormone-related, reproductive, male-specific, and female-specific conditions and situations have the potential to cause hair loss, including: Birth Control Pills Hormone-replacement therapy (HRT) for women (estrogen or progesterone) Male androgenic hormones and all forms of testosterone Anabolic steriods Prednisone and other steroids Inflammation Many anti-inflammatory drugs, including those prescribed for localized pain, swelling and injury. Arthritis drugs Nonsteroidal Anti-Inflammatory Drugs including: Naprosyn (naproxen) Anaprox (naproxen) Anaprox DS (naproxen) Indocin (indomethacin) Indocin SR (indomethacin) Clinoril (sulindac) An anti-inflammatory that is also used as a chemotherapy drug: Methotrexate (MTX) Rheumatex (methotrexate) Folex (methotrexate) Parkinson's Disease Levadopa / L-dopa (dopar, larodopa) Thyroid Disorders Many of the drugs used to treat the thyroid Ulcer Many of the drugs used to treat indigestion, stomach difficulties, and ulcers, including over-the-counter dosages and prescription dosages. Tagamet (cimetidine) Zantac (ranitidine) Pepcid (famotidine)

I haven't been officially diagnosed with POTS yet, but I do have a lot of headaches (4-5 a week) and I also have a lot of calve pain and leg pain for no reason.

Thanks KC, I know exactly what you mean, some days I feel like the only person that understand is my mother. Hopefully we both get to hear the news we want to hear about our TTT . Have a great Monday as well.

Thanks , to bad it wasn't the answer to my problems as all the doctors said it would be.

Hi everyone, I have been following this form for a few months and decided to join even though I'm not sure if POTS is what I have. I have had a high pulse rate since I have been a teenager, maybe younger according to my mom, but the teen years is when the doctors started to point it out. No one really thought much of it, and said it was anxiety. I would have a rush of adrenalin feeling and a racing heart rate all through my teen and adult life. The "anxiety" seemed to get worse in my early twenties as did my high pulse rate. By then I was very obese (4'11'' and 230lbs) so all the doctors said it was due to my weight. So I lived believing I had anxiety and needed to lose weight. Finally I got myself together and lost 100lbs, but my pulse rate and rush feeling never went away, and if anything got worse. The past few years I started to experience palpations, gray foggy vision, dizziness, and the high pules rate continued. In July of this year the palpitations got really bad, as did the dizziness especially when I was out shopping or doing things around the house. My mom told me to go to the doctor. I was put on an event heart monitor. I was able to record more then 10 events in 3 day, and didn't have to wear it for the full month. The test came out that during my palpitations my heart rate would go from 60 beats to 154 beats. After that my doctor sent me to a cardiologist. Right before I went to his office I saw a program on TV about orthostatic intolerance and it sounded like they were talking about my life. I asked him about it and he blew it off asking me "how could I be so sure its not anxiety?". I told him "Well I feel the heart symptoms then I get anxiety, not get anxiety and then feel the symptoms". He did a quick test in the office with have me lay down take my pules, sit/ take my pulse, and stand take my pulse. there was an increase of only like 10 beats in between and the whole test took about 1 1/2 minutes to do. I asked for the real tilt test and was told no its not necessary just to increase my salt and fluid. He scheduled me for a stress test, echo cardiogram and some basic blood work. After the tests came back the doctor called and said "all these test came out normal, I did excellent on my stress test, and my heart structure looked perfect". I told him "So I guess Im like a chihuahua, just have a fast heart rate and nothing to worry about?" After a good chuckle he decide to put me on a holter monitor. This time the when the doctor called he said that my test result came out interesting. The results came back that my average heart rate was 72, My heart rate when sleeping was 60, but when I woke up and was moving around doing normal thing like brushing teeth or washing dishes, things that are not stressful or used a lot of energy my heart rate would spike. He then said I know that "we" ruled out POTS but I would like to go back to that. All I could think of was maybe you ruled it out, but I still had hope, that maybe for once its not in my head, Im not crazy and that there is a explanation to my symptoms. Now I am scheduled to a tilt test on Thursday. I feel very weired that for once in my life I am praying that I will fail this test and finally know what is wrong with me. Even if there is no cure for this, at least I know what it is and I can move on. And in the back of my mind I can't help and feel but what if I'm wrong again and now I'm back to square one. Sorry guys for the extra long ramble about my life and symptoms. Yuliya