bren22

I had an open muscle biopsy. Why are you having one? After I had mine, my PCP (who was not involved in the muscle biopsy prior to the procedure) asked why I didn't have a needle biopsy. He thought that you can get the same results with less pain and recovery. As for the biopsy, you definitely don't want to drive after. I felt very shaky after. Basically the doctor freezes the outer layers of skin/etc but the actual muscle is not frozen. The harvesting of the muscle tissue is quite painful. I could walk after but will significant pain and limp. As I recall, it took weeks, maybe even months, before the pain resolved. It was bearable after a few days but it really stayed with me. I am sure you could stay alone but I would make sure that meals were predone and all you had to do is microwave them. Or ideally have a friend come and stay the first day just in case. If you want further info, ask away.

Just had this done a little over a week or so ago. The Orange shows my Sympathetic Activity and the Blue shows my Parasympathetic activity. I'm referring to the graph on the bottom right. As you can see, I'm in Sympathetic Overdrive. This is what I've been trying to tell so many Dr.'s for so long.

Well now that this is established, the Dr. that did this test on me is trying to get my situated with Vitamins, Amino Acids, etc.

He says I am undermethylated with high levels of Histamine which is why Benadryl helps me. It will take time, but this Dr. specializes in restoring Autonomic Balance.

We are starting with B12 and Folate in high doses which I am having trouble taking as they make my anxiety go nuts, but my levels were low and until they get to normal range, I'm told this is what I have to go through.

Just thought I'd share this with everyone.

BTW, this was taken with 80mg extended release Propanolol on board. The Dr. said we probably wouldn't have seen much blue had I not had the medication in me.

Dustin

Hi Dustin

Can you tell me what kind of testing you had done? So far, all the testing that is done in Canada (at least as far as I know) is the tilt table. This has not given me very much information regarding treatment etc so I am looking for any alternative routes/tests that can give my doctors direction.

Thanks

Bren

Has anyone been diagnosed with Addison's disease? I read a newspaper article and it seem to be me. I have Hashimoto's thyroiditis which I am being treat for. I don't think that my med levels are right as of yet. I had one bad cortisol test (1/3 of the low end of normal). My next test was normal. Can the levels fluctuate like that? Or is a mistake at the lab more likely? I have been gaining weight. I am absolutely exhausted. I have been more dizzy than normal. I am craving salt like crazy and am so thirsty. My blood glucose levels seem normal. Any ideas?

I have heard so many negative things about Lyrica that I have always refused to take it. My PCP is against it. However, I have a neurologist who is a sleep specialist and he is pushing for me to change my mind. I tried gabapentin (a related drug - generic lyrica) and it kept me awake rather than helping me sleep. The neurologist says that reports of negative effects for Lyrica happened when the drug first came out and the only dosage available was 75 mg. He wants me to take 25mg. What dosages that people been taking and what effects, good and bad, have you experienced? My PCP is out of the country for 2 months so I am on my own. The only other alternative that the neurologist is zopiclone but you can't take it everyday. It also doesn't seem to be working very well.

Hey all,

Last night I was very exhausted and angry and when I stood I felt like I was floating when I walked. So i took BP while standing it was 128/87 and heart rate was 115 , this was standing 5 minutes at the most. anyway I have never had 120/ over anything ever and I felt terrible . Usually its 90's maybe 100 over 60 or 70 .

Should that really make me feel worse or could my body just not be use to it that high? Curious because I'm suppose to be taking fludrocortisone and if that increases BP wouldn't that make me feel worse?

Thanks Lissy

I believe that it is possible that the fludocortisone could make you feel worse. I spent 6 months on florinef and midodrine along with a beta blocker and as my bp went up (even though only a bit and was still technically low) I felt worse. I had terrible episodes of shortness of breath (along with other things) in which I could hardly talk. My cardiologist discounted my symptoms. But once I stopped the meds and my bp returned to its usual very low normal, I felt better. My advice is to start at the lowest dose possible and tell your doctor immediately if you have problems. Good luck

Bella,

You are such a delightful person. It is great to know you where treated so good. I hope and pray that they can make your suffering go away.

Love, Mary

MaryMalta,

You always make my day as you are a delightful person also!!!

Thanks for your kind words I hope and pray all our sufferings

go away.

I know there is a reason we are all here and a reason we have

all been touching each others lives. Without Pots all of us would

have never met.

I try to pull all of the good things of of all of this and remember

that I'm not alone with sweet people like you Mary. Thanks again

for your continued support.

xxx's

Bellamia~

Can I ask the name of the doctor? I live in Canada and have seen many specialists but no one knows what to do with me. I am currently trying to get my medical coverage to pay for a trip to Boston for assessment and treatment. This clinic/doctor should the most promising I have heard about in a long time.

Good luck to you.

Bren

I was hoping you might give me some guidance about an appt I have on Monday with a new neuromuscular specialist. I have gone this route before with no positive outcome but my new neurologist thinks it is still a valid avenue to pursue. My concern is that they will do the EMG and find nothing and then it is over. Do you know anything about small fiber neuropathy (ie. testing, etc)? I am hoping that they will be able to help explain the intermittent tremors in the very least and the weakness, tingling, burning sensation and pain in the best of all worlds. And could neuropathy affect the digestive tract? Any advice would be much appreciated. I am feeling so overwhelmed by the number of appts without any positive treatment outcomes. I want to be proactive in every appt but I feel a bit lost.

Hi All,

I was wondering what the migraine suffers who also have POTS do to relieve symptoms. I am looking for the best remedies and treatment/meds for the POTS people. My sister has terrible migraines and I'm pretty sure she has POTS also. Nothing seems to be working for her. I know that vasodialtation/constriction plays a part in migraines and POTS, but are the mechanisms the opposite of one another?

Thank you!

The thing that worked best for my migraines was actually a surprise. I was prescribed domperidone for gastoparesis. Since starting the med, my abdominal pain decreased and so did my migraines/headaches. A very nice bonus.

Hi,

I don't know if this will be helpfull, but I've tried homeopathy here in Ireland with no success. She was also very positive that the remedies will help me, but after trying a few different ones I just gave up. Your story might be a different one, and I would love to hear that someone was cured with natural medicine.

I've also tried acupuncture and oriental herbs. Nothing gave me the relief even from tachycardia, although acupuncture and herbs are considered to be very effective for heart problems. Maybe the girl wasn't very experienced and chose the wrong points and herbs.

Have you tried an osteopath? I am also considering this due to my fibromyalgia/CFS symptoms. Not sure it will do anything for POTS but hoping for pain relief/constipation relief for a start.

I finally got my tilt table test results and found that it contained a wealth of information. However, as my cardiologist has pretty much written me off, I don't understand what it all means. Here are the results:

1.Positive tilt table test for vasodepressor type

2.Increased beta adrenergic sensitivity

3.Abnormal epinephrine response

4.Decreased beta reflex sensitivity

5.Normal intrinsic heart rate

6.The epinephrine blood work is still pending

7.Decreased alpha sensitivity with normal activity.

Anyone know what any of this means? I have tried googling it and came up with the fact that it explains some of my gastrointestinal problems but that is it. I am looking for treatment suggestions, abdominal bloating solutions, decreased fatigue.... Anything would be a help as I am primarily bedridden. I am trying to be proactive as my doctors are at a loss.

HI...just wanted to say hello.. I do not know what your results mean..hopefully someone here will. I too am awaiting my autonomic testing results. But why are you bedridden? And when I heard you say your cardiologist wrote you off. maybe..just maybe..thats a good thing. Do you have a neuro who specializes in Autonomic problems? They seem to be rare...keep your hopes up..write more ok?

Warmly Jan

Hi Jan I am primarily bedridden due to the chronic fatigue. I am so tired that basically it is going to the bathroom anc that is it. I do more when I absolutely have to but then I pay for it and feel worse. I am looking for a neuro that might take my case but there has been on response to my referral after 4-5 months. I am to see a new cardio in March and if he doesn't come up with anything, my primary care doc wants to send me to Boston to see Dr. Roy Freeman. Heard anything about him?

Bren

Has anyone tried this type of treatment? I have been trying some energy work and the practitioner suggested this homeopath. Having talked to the homeopath, she is suggesting that she has a 98% cure rate. This makes me nervous as I have been sick for so long and tried so much that hearing a near perfect success rate sounds absurd.

I finally got my tilt table test results and found that it contained a wealth of information. However, as my cardiologist has pretty much written me off, I don't understand what it all means. Here are the results:

1.Positive tilt table test for vasodepressor type

2.Increased beta adrenergic sensitivity

3.Abnormal epinephrine response

4.Decreased beta reflex sensitivity

5.Normal intrinsic heart rate

6.The epinephrine blood work is still pending

7.Decreased alpha sensitivity with normal activity.

Anyone know what any of this means? I have tried googling it and came up with the fact that it explains some of my gastrointestinal problems but that is it. I am looking for treatment suggestions, abdominal bloating solutions, decreased fatigue.... Anything would be a help as I am primarily bedridden. I am trying to be proactive as my doctors are at a loss.

I was wondering if anyone noticed what triggers their tachycardia. I have been noticing that I wake up in the night with it. Obviously not related to getting up, etc. I also find that if I overdo it, activity wise, the next day I am very tachy. This morning I was running 120 at 7am while getting some morning tea. I feel like I am vibrating and then can't get enough air. Any tricks on bring the heart rate down?

Sorry about your experience. I am not quite sure what he meant when he said you would have to be followed very closely with mestinon. I was prescribed Mestinon by Mayo Clinic in Rochester. My doctor in Maryland followed me but no more closely than she would have with other meds. I don't think Mestinon is a dangerous drug in comparison to others. It, too, is pretty fast acting.

Did you say you wanted to give Mestinon a try? Mestinon is among the arsenal of drugs for POTS. I think you need to be firm and positive when you speak with your doctor. Sometimes I think the doc gets turned off if the patient is not willing to try different things.

The next time you go to doctor for treatment of POTS you might think about taking the section of the DINET page that lists the various drugs that have been used to treat POTS. There is no magic cocktail as you surely know. You really need to have a doctor willing to take the time to explore the various possibilities.

Lois

I had to push in order to get the prescription for Mestinon. He basically said that 99% of the people would have responded to the 3 meds he have me so apparently POTS was not significantly affecting my symptoms. He wanted to leave me just on bis-propolol and that was it. I asked about other meds as this forum has given me the idea that there are many different combinations to try. It is ironic as when I started to see this doctor, he said that treatment takes time and adjustments to meds would have to be made. I am not big into drugs based on my reactions but I think I have been open to the concept as I am desperate to get even a little improvement. What has been your experience with Mestinon? Can you direct me to the section on the DINET page with the drug possibility?

I want to thank you and everyone that responded to me post. It is great to get support from people who understand where I am coming from.

is it possible that you would've done better on only one, or two of the meds you were taking? are you and your doctor sure that you were reacting badly to all three? what about trying a lower dosage of one, or two of them?

I wish that I had started one at a time and at a lower dose. After 6 months, the doctor told me that he had started me on a significant dose. What was he thinking? Had I known I would have suggested titrating up to the max dose and seeing how I reacted. I am now only on bis-propolol. My bp has not come back down and I am still experiencing high heart rate and pounding heart even at lower heart rates. I am very confused.

The first few times I saw my cardiologist he seemed very supportive. He told me that it would take time to find the right meds and the right dosages. I had a positive TTT and then he put me on midodrine, florinef and bis-propolol. It was a very difficult 6 months. I felt worse. I find that if my bp increases, I have more chest/throat tightness/pain, shortness of breath, tremor in left hand... He kept tell me via email to continue on with the meds. To give it a chance. So, I finally had my follow-up appointment and I couldn't believe it. I feel side swipped by him. He said that based on my reaction to the drugs, he doesn't think that my dysautonomia is causing most of my symptoms. I have CFS/Fibromyalgia in addition to dysautonomia. Now he thinks that I only have minor dysautonomia and that 99% of people would have responded to the meds he gave me. So I should stop midodrine and florinef and that is it. I pushed to see if there were other alternatives and he finally said that I could try mestronin but that I would have to be followed quite closely and he would refer me to a collegue in my hometown. What happened to it takes time? What happened to finding the right combination? Has anyone else experienced this? When you come off midodrine and florinef, how long does it take for the effects of the meds to dissipate? My bp is still slightly higher than my normal levels, which are quite low, but at which I feel more comfortable. Has any one noticed that their symptoms are more severe when they extend themselves? I am so tired. I feel abandoned by my doctor. I wonder whether it is worth treating. I am so sensitive to everything.