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New to dx. and need support


Jackie
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My story is a very long one so I'll try to be brief. The bulk of my problems actually started last summer after taking a calcium supplement of all things. I am 36 and have osteoporosis. I tried calcium supplements before and found that they made me excessively thirsty and excessively urinate so I stopped taking them. My doctors claimed to have never heard of that and so it is still a mystery. In any event, I started having hot flashes and constant nausea after that and started also 2 weeks before menstruation to have this horrible feeling like I was weighed down by gravity, having no blood flow to my head, dizzy, and sick feeling. Then I also started having a palmar rash before my periods too that seemed to be hormonal. The symptoms seemed to wax and wane with my periods.

In any event, this was actually 2 years ago. Last summer I tried the supplements again because I had been experiencing daily diarrhea for weeks and with the diagnosis of osteo I felt I needed them and had the thirst, urination, and then tachycardia and hand and feet sweating that started within an hour of taking the calcium (similar to a reaction I had to steroids a few years ago which persisted for 6 weeks and only abated after taking atenolol which I had to stop due to depression after a week and somehow over time with vitamins I seemed to balance out). In any event, the tachycardia (as well as palms and feet sweating) persisted and I started having palpitations. At the ER, I was diagnosed with "anxiety" and given Ativan. It was a downhill slide from there. For months, I had daily diarrhea, persistent tachycardia (classic 30 beat increase from even lying down to sitting up), rapid weight loss, loss of appetite, and extreme anxiety, started having morning sweats (I'd just wake up in a sweat and my heart would take off racing). The Ativan seemed to cause me sleep problems, sensitivity to lights and sounds, and when I tried to not take it I would experience acute anxiety, etc. I was worked up for thyroid problems, etc. I ended up with a diagnosis of irritable bowel by GI doctor, POTS by cardiologist, and anxiety by psychiatrist. Family doctor....no help.

Finally, very ill I made my way to Dr. Grubb at MCO (I live in Ohio and actually worked at MCO before this occurred) thank God and he diagnosed me with POTS. However, his idea was to give me Lexapro. One dose of Lexapro 5 mg made me extremely agitated and I had tremors going down my spine...I felt like I was going to have a seizure. I was a complete mess by this point and still the non-stop heart racing.

Nobody (meaning my family physician and actually even Dr. Grubb) knew what to tell me about the Ativan and how to get off of it and since the Lexapro left me in a much worse state I felt very helpless and scared. Dr. Grubb did give me atenolol though and that one medication that works on salt (which I have to say I was afraid to take and his office staff didn't call me back). So, I sought out a psychiatrist and an outpatient program at a nearby hospital actually at this point not caring what the cause was, but needing help desperately....I feel like the medications I had been given gave me much worse problems than I had originally...which was heart racing and hand and feet sweating. Now I had agitation and anxiety beyond belief and really could not function and did not know my way back to getting on track. He diagnosed anxiety of course and switched me to Xanax. So, I went through that phase with him now for about 4 months where I've been taking Xanax and atenolol and honestly most days I still do not fell well but I force myself to get up and function (luckily I work from home as a medical transcriptionist).

My questions to others are these:

Has anybody had skin rashes on their palms related to this or seemingly tied to hormone changes?

Anybody experience hand and feet sweating with the heart racing?

What better beta blocker could I take than atenolol because 25 mg seems too much for me....I run low on my blood pressure and when I take it it makes my blood pressure like 90/68 and I feel cold and tired and kinda' depressed and dizzy.

Has anybody felt worse (females of course) in relation to hormone changes before their periods?

Does anybody else have irritable bowel (which is what the GI Dr. said but the psychiatrist said all anxiety).

Actually where I am, I have Dr. Grubb who said POTS and gave me the 2 medications but because he is so good he is hard to really actually get access to for treatment and questions and since he gave me Lexapro and then left me in a bad state I can't say that was much of a help. The psychiatrist says all anxiety which I willing to go along with almost until realizing if so why still the passing out feeling and blood pressure problems, etc. Somehow also, I feel like my hormones are playing a role in this because I tried a birth control pill and that stopped the night sweats, but I had periods of anxiety and depression so I stopped taking them recently to. I feel basically like something is "out of whack" in my system. Has anybody suffered anxiety along with their other symptoms? I think the psychiatrist is well meaning but wrong and that not all of this is simply stress.

Anybody at all have anything similar to me in relation to symptoms? I feel so alone in all of this even though many family members of mine have different forms of dysautomia (most pass out...neurocardiogenic syncope)...I have the other end of the spectrum problem...high heart rate with dropping blood pressure.

Any help, encouragement, insight, suggestions would be greatly appreciated.

Also, if anybody lives near Toledo, Ohio and knows of a good family physician or DO or neurologist or anybody else who deals with this stuff in my area would be helpful.

Thanks

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Hi Jackie!

I had symptoms very similar to you when I first became ill, except I didn't have anxiety or a rash. Calcium has also made me feel worse.

I know a doctor in California is doing some research on dysautonomia and mitochondrial disease. He's the only one I've heard mention rash as one of the presenting symptoms, though rash can be a symptom of many, many things. You mentioned that others in your family have dysautonomia. Does it seem to run in the males, females or both?

Here are some answers to your other questions:

I take 12.5 mg toprol (beta blocker) daily. (I cut a 25mg pill in half)

Many women report a worsening of symptoms around menstruation and many people report GI problems.

There are some doctors in Ohio listed on the physicians page of www.dinet.org

We also have a "Meet Others" program that will put you in touch with others with dysautonomia in Ohio. You can sign up for it at the DINET site.

I hope this helps!

Michelle

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Thank you so much for responding. I do love Dr. Grubb at MCO, but I guess I just don't like being so in the dark. He is SO good that you have very limited access to him I feel. The nurses have not been very good at returning calls in the past and I kinda' feel left in the dark. One good thing that did happen was that my family physician also became aware and therefore knowledgable about this condition through a telephone conversation with Dr. Grubb which is fantastic, but still he does not know what to do to help me. I think Proamitine is the drug that Dr. Grubb gave me that I did not try with the beta blocker. I should maybe call their office and see about starting it but I guess I am very fearful about medication and moreso after everything I have been through. It seems I was so sick I finally became willing to take anything that came down the pike from a doctor and that was how I ended up on anxiety meds. I didn't really feel like it was anxiety when the heart racing and hand/feet sweating started, but I did feel "keyed up" and "worried" since my heart was racing in the 140s+ and nobody seemed to know what to do about it....it persisted for much of the day and then sometimes would start again and the stop and then start abruptly later and with the palpitations I do believe I began to feel like I was dying or something and this literally went on for over 100 days. The true panic attacks I feel though started after taking Ativan. I did not like that medication. I absolutely abhor medications and hate being on anything but here I am on Xanax. It has been a very long road and very confusing. I think my situation was made worse by being diagnosed anxiety before I ever made it to a cardiologist (Dr. Grubb). By the time I had been to the ER 10 times and hospitalized twice for electrolyte imbalance, colonoscopy, and workup for everything under the sun such as pheochromocytoma and carcinoid syndrome, and then sent home the same way I went in I was ready to accept anybody who would help me in any way possible. In my experience, 99% of doctors have never even heard of POTS much less know how to treat it. Any time in the hospital when I said I was having chest pain or felt like I couldn't breathe (this wierd smothering feeling like my lungs were glued together) the nurse would say "would you like an Ativan". When I was first admitted, my sister would wheel me outside in a wheelchair because I had lost 20+ pds rapidly over about 5-6 weeks and was so weak and shaky and one of the doctors made a comment and asked why I had a wheelchair in my room and kinda' made fun of me. It was a horrible experience. My desire is for doctors to have just 1 hour of understanding (suffering what a patient is feeling) so that they will be enabled to have compassion.

I guess I feel like I just have gotten straightened out from the medication reactions of all the anxiety meds and the Lexapro they had been giving me but I feel like I am at a plateau and do not know where to go from here because I still do not feel well and know that something has to change in my medications. Either I have to start the Proamitine and try it or change beta blockers. Since I had such an exagerated response to the SSRI Lexapro I'm now afraid of all antidepressants. I'm just not my old self. I get sad sometimes because I am only 36 and feel like I am 90 years old or something. It helps to come here and I hope I meet somebody to correspond with who can be supportive because family members, try as they might, do not truly understand (husband)!

The people in my family who have types of the disorder are:

Mother (we think, because she was diagnosed with chronic fatigue 13 years ago and has all classic symptoms but never tilt-tabled).

My sister, who was diagnosed by tilt table, but later then diagnosed with MS (so does she have both?)

I have 2 nieces that pass out - never tested or diagnosed.

I have 1 nephew with neurocardiogenic syncope (passing out) diagnosed and being treated.

I have an Aunt who passes (like nephew - blood pressure and pulse bottom out) - neurocardiogenic syncope dx. - reluctant to try meds - now on Lexapro.

I have another nephew diagnosed with POTS as a teenager treated with meds - no longer passes out and is not on medications anymore.

All of my mothers sisters (including the Aunt with neurocardiogenic syncope) have been diagnosed as having "anxiety disorders" because of rapid heartbeat and my mother and all her sisters have at one time been on anxiety meds (except the resistant Aunt who is now 68 and trying Lexapro).

Other than that interstingly enough, I have 1 brother with rheumatoid arthritis and another sister diagnosed with fibromyalgia. Quite a family hx of autonomic disorders and autoimmune diseases. So, I am on a journey I guess to find out how all my puzzle pieces fall into place. Do I have something else causing palmar rash before my periods? Is this a sign of some allergy or underlying autoimmune process? Is the anxiety from the medication (i.e. benzodiazepines) or a symptom of POTS. It is my understanding that anxiety is a symptoms of POTS, as well as sweating, etc. Of course, the psychiatrist I ended up at dismisses everything and says it is all anxiety. The treatment patients receive suffering with these symptoms is enough to give anybody an anxiety disorder I believe. Who in the world can not worry when their heart is racing 140 beats a minute and they can't stand up, have constant diarrhea, and feel like they are going to pass out?

I realize this is very long and I apologize. I just have nowhere else to go to talk about this stuff and it is all very confusing. Is this just something we have to suffer silently with trying to manage the symptoms without finding a cause? I was tilt-tabled but it seems different things cause POTS so why not get to the bottom of what is causing mine instead of just treating symptomatically? Is this how it is done? Can't they ascertain if it is catecholimine transport deficiency, etc. or whatever specifically?

I guess I go back and forth thinking yes it must be POTS, but geez I feel so menopausal and PMSy maybe anxiety is a big component, but why do I feel so bad especially before my period specifically and why the rashes, dizzy spells? It just doesn't make sense so I pray for a doctor who can look at the whole picture and not just 1 tiny part and make their own judgment based on their own specialty. This kind of broken medicine just makes it worse. We need doctors who can look at the whole person and take in the whole picture. Maybe there is no wonder cure, but I'd sure be better off without all this confliction in doctors (though the dx all seem to add up - anxiety, sweating, hypotension, rapid heart rate, irritable bowel syndrome, dizziness, sometimes morning sweats, etc). to something neurological. I also have gotten more and more fearful of driving on the expressway because I feel disoriented at the speed of the cars so I don't know if this is part of it or if it is because of having been in so many car accidents before that I just have a phobia. Anybody having trouble with traveling? I guess I've just let myself fall into thinking I am indeed crazy because nothing has come through to help me a whole lot so far. I wouldn't wish this on anybody. Thanks again for responding. I also did sign up for that thing you mentioned to meet somebody in my area. I look forward to a respose on that! Most importantly, I think I am going to call around and find a new family doctor finally. I need somebody to work with me through Dr. Grubb (since the appointments are spaced like 6 months apart). I need somebody to guide me through the medication and watch my electrolytes, etc. a little more frequently I think.

That is why I posted. Since Ohio is so saturated evidently, there have to be good family doctors to help with this in addition to the specialists, so if anybody knows...start naming names! :) (Toledo, Ohio area). Thanks and God bless!

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Yes to many of the things you experience. I get rashes, but mine are allergic in nature. I've taken Celexa at a low dose for 2 years now. The first few weeks were ****...I was extremely aggitated and nauseated, but once that passed, I think it did help me with my GI functions.

Welcome to the board. I hope you find useful information here.

Nina :)

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Guest tearose

Welcome Jackie! I don't think I can be of much help tonight, I've been having some trouble with keeping my focus...anyway, I wanted to welcome you just the same. I do want to encourage you to hold on tight right where you are and start pulling yourself up and forward! The feelings you have expressed about being hot, sweating, feeling your heart race, funny feeling in a moving car...these can all come from dysautonomia and some symptoms can overlap with other illnesses. Keep looking for the answers. You are 100% correct in my opinion about a good gp/internist at the center of your care. Once you find that doctor to be the "co-director" with you in your care, I believe you will find your way. Oh, sometimes when there is alot I'm trying to figure out I like to take a pen and paper an write down my thoughts. I also enjoy sitting down with my tea or coffee and reading through the archives to see what others have done when they have to deal with similar problems. I know you will find your way because you found us! Hang in there and try to have a peaceful night! tearose

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Thank you everybody for posting responses. I have even received an e-mail with names of people in my area and have sent out at least 1 e-mail contact so we will see if she responds...hopefully!

I could almost cry seriously right now as a let-down of emotions from all the stress of bearing this for the past almost 8 months now. I truly have been made to feel crazy at times and at times also like I said have almost started to believe it...okay I'm crazy then give me crazy pills...something! Anything!

I don't know how you made it through the Lexapro adjustment (sorry I forgot your name and can't see it from here...kind person who posted). I also had increased salivation and the tremor in my spine in addition to just basically feeling like my whole body was going to explode or have a seizure or something. I truly felt like it was an exercise in mental torture and I only took 5 mg once. I commend you for enduring it until it paid off.

I am afraid to take antidepressants, but here I am on benzos (Xanax) and equally afraid of it because of its addictive potential, yet it feels so different from the Ativan that I hardly believe I will become psychologically addicted (Ativan made me feel all different ways, sometimes almost drunk, sometimes hyper-alert, sometimes tired, sometimes wired)....Xanax has not been a mood elevator for me...it just keeps my body calmed down (that feeling that started with the Lexapro...like hyper-excitation or something of all the nerve endings...it calms that down).

It seems like one minute I was going along in my life great and then little by little I noticed changes in my energy and abilities. Right before I got sick, I actually would bend over to pick something up while cleaning house and would hear the blood rushing in my ears and think geez am I that out of shape?! I had to clean the house in bursts....wash dishes...take a break...vacuum...take a break...I am only 36 years old and this is not normal.

There is so much I could pour out here but I think I've set the record for length of yammering today in my postings so I will stop. I look forward to being a regular part of this forum and hope to learn much and most of all find strength and hope in all those who are holding fast, enduring, and even succeeding with treatment.

I wanted to thank the last person who posted too, Tearose, I think. It was very uplifting and what really brought me on the verge of tears. I am so glad I found this website.

I have so many questions for everybody...I will post more tomorrow and hope people do not get sick of me too quick! :)

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Jackie -

It helps to have one doctor to lead a team of doctors or totally handle a POTS patient. Don't be put off! You call the shots. Start by calling doctors' offices and asking if the doctor is familiar with POTS. It may take a while but definitely worth it!

GOOD LUCK!

Margaret

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Dear Jackie,

I cried when I read your post. Big hugs dear. This is so difficult and I'm never sure anyone ever really understands. And then we read something like this and go ... wait, look, there is someone out there who "knows".

Each of us seem to have to find our own path. But I can share with you some of the things I have learned about myself along the way. I also have trouble taking calcium. I do however take 800 mg of Magnesium each day (200 mg doses 3-4 times throughout the day.) It helps my heart not skip so much and helps me feel a bit more balanced.

I didn't do well on beta blockers -- and my current cardio recommended against them. I relapsed this summer also ... lost 15 pounds, the panic attacks were horrendous as was the nausea, shaking and inability to stand. Things are coming back for me now ... little by little. I try not to push too hard and try not to beat myself up.

In December, I changed my thyroid dose and began taking salt tablets and something called DDAVP (anti-diuretic) and I have been able to put on about 6 pounds so far. With another 8 or so I'll be back to where I was in August then I can start tapering off the DDAVP.

I'm trying some new therapy for the panic attacks -- it's called somatic experiencing and EMDR -- also some Qigong (chi kong) and massage. Each seems to help in it's own way.

I am so sorry you are having such a hard time my dear. I know what this is like and I wouldn't want anyone else to go through this. (goodness I'm starting to get misty again.)

Good thoughts,

Stay in touch.

EM

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Jackie, I am so sorry you are going through such a difficult period. I would like to share something that happened to me which I frequently refer back to regarding anxiety. Like most here I hate the "A" word.

After 4 trips to the ER, I was in the hospital and after a week of tests was finally diagnosed with POTS although the word anxiety was discussed a lot before that. The lead doctor on my case told me NEVER to let anyone tell me that anxiety was the CAUSE of my condition. He said anxiety COULD cause some of my symptoms HOWEVER there is NO WAY that my heart would ONLY race when I stood up and he had watched this on my monitors for days. While I disliked almost everything else he had to say (LOL), I will always be grateful to him for this and for finding the right diagnosis. He did note in my records that "patient refused Xanax".

It was another 2 years before a new doctor helped me understand about overstimulation and inappropriate adrenaline response which were causing many problems and I now use a very small dose of Ativan.

I guess what I am trying to say is that YOU probably know your body and mind best and will know when you find the right combination of meds that are best for you. Do take care and I hope the support you find here will help you know you are not alone. All the best.

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Welcome Jackie; nice to have you on board.

Anxiety was a big issue for me before I knew what I had and was on the right medications. I felt many of the same things you are feeling right now. My heart goes out to you. I pray that you can find a supportive family physician. I had a period where I was having panic attacks in public and it was really embarrassing. Many times I was sent in an ambulance to the ER where I was treated terribly. Thank God I no longer have these episodes. I can tell you my body is very sensitive to emotions and I definitely feel everything more. Before becoming sick things never bothered me and I was an adrenaline junky. Now I avoid anything that causes too much adreneline. I want you to know you are not crazy even though you may feel like it. This illness and poor treatment from the medical community can make you feel like it at times. Don't let these feelings overcome you. You do need to take care of your mental health, because it can help with the healing process.

A psychiatrist's job is to diagnose you. Often they find something and dismiss the medical stuff, because they do not know anything about dysautonomia. I had a counselor and a psychiatrist who worked together diagnose me with cyclic manic depression. Yeah, one week I was hyperadrenergic and the next my blood pressure was so low I could hardly hold my head up. My counselor just could not believe someones symptoms could wax and wane so much. I look back at it in humor now. Can you believe I am still seeing the same counselor. I knew she was a great person and very talented counselor. I had to give her a chance. She now is much more knowledgable about the POTS and no longer thinks I am manic depressive. I can laugh about it now. We now have a great relationship and she is a good support system.

If you are able to find a good counselor willing to learn about POTS I strongly suggest it. Dealing with emotional stress just makes all of the POTS symptoms worse. It is nice to have support. You will find a lot of it right here on this forum.

Hormones: I havethe night sweats and and very symtomatic PM...major PMS. It is good to have your levels checked. Mine where fine. I now take the pill continuos so I no longer have my period. I am no longer bed ridden PM, but still more symptomatic.

Medication: I am on 20 mg of Nadolol...could'nt tolerate atenolol

.1 mg florinif..midodrine did not help

effexor and wellbutrin...they have helped with the POTS symptoms,fatique and depression.

It took a lot of trial and error to make me feel half normal.

If you are unable to find a Dr knowledgable about POTS maybe you can find someone who is willing to learn about it. I gave my PCP the most consise information that I could find on POTS and treatment, it was a guide for Drs. I wish I still had a copy of it. She has done some research on it herself. She has become very competant in treating me and now sees other POTS patients.

There is a light at the end of the tunnel. Hopefully the tunnel is not to long for you. This is a process of grieving, figuring out your body, finding the right meds, and a good team of Drs who are willing to try and help you. What I have learned from this process is that we are in control of our own healthcare. Equip yourself with knowledge and have proff to back yourself up. I had to learn to stand up for myself, which is something I don't usually do.

Hang in there! Remember we are here to support you, noone should have to go through this alone. Thanks to Michelle we have this wonderful site.

Big Hugs Dawn

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Dawn, thank you for your words of encouragement. It is funny that you mentioned manic depressive because when I first saw the psych guy he mentioned they would watch me for that. I thought grreeaaatttt....what's next a sanitarium! Luckily he hasn't brought that up in a while, but then again, I get like 5 minutes with him, and he says how are you, okay, here is your rx. see you in 2 months. Any questions are responded to by...it is all anxiety. I definitely need a new team of professionals. This guy was assigned to me at the hospital and I did not get to pick him and he was supposed to work with my physicians on my care. Well, it has been 4 months and finally on my third visit with him I was coherent enough from my atenolol/Xanax induced fog to ask him if he ever did speak with my doctors such as Dr. Grubb and he said "no...it is anxiety...it runs in your family and you have it"...and that as they say is that I suppose.

I wish I lived where you did so I could go to your counselor!

I definitely need a new team of doctors at this point.

Lastly, can I ask you, did you have any trouble starting Florinef? I am so afraid of side effects now I hate the thought of trying anything new....but then I realize I have to step out in faith and overcome the fear in order to get better by trying things to see what will work.

Also, what BC pill are you on? I tried one that was too high in progesterone (made me lethargic...it was multiphasic) and then I tried a low-dose pill which seemed to make the anxiety a little worse and now I am just bottomed out after stopping them after 3 months (2 months phasic pill, 1 month low-dose). I think staying on them without a break would be great because my periods were so much worse than ever during that 7-day break (the anxiety, sweats, etc.) By the way, I am 36 and a smoker which I really need to stop in case this has something to do with POTS too. Just wondered your age and if you have to take aspirin to take the BC pill continuously. When I tried to take aspirin, after just a couple days I started brusing easily. Geez...I just can't win...I feel like such a whiner!

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I had no problems starting florinef and did not have any side effects a few years back; however, many people do report having side effects such as headaches, rapid fluid gain, etc. Also, when my doc restarted me on florinef after being off for several months, it shot my bp way too high and I had to stop (it never did that in the years I took it before...something like 3 years?).

Nina :D

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Jackie,

Hi! Welcome, it sounds like you are going through a lot right now. I also dealt with intense anxiety at the beginning of my POTS onset. I had a couple of panic attacks and just felt really irritated and edgy alot. I would keep in mind that many of us are extra sensitive to meds right now and you may just need a very small dose....

for example, I take a half of the lowest dose (25mg) of toprol xl....it's great because of the slow release (beta blocker).

Also, I take the lowest dose of Paxil CR (which is also slow release which is good because you don't get a huge surge of medicine at once) It is 12.5 mg. This has helped my anxiety TREMENDOUSLY! I wasn't able to even go into public settings until I started on this and now I'm not anxious at all!

Hang in here and I hope this helps,

Lisa

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Hi Jackie! I am also 36 turning 37 on March 7th! I had not smoked for 13 years and I started up again after becoming ill. I was just sooooo frustrated with everything and everyone. I tried to do everything right but nothing was going right so I did not care anymore. I have not told my PCP. I am a light smoker and a closet smoker. It feels good to do something naughty and rebellious even if it is only harming me. I did quit 2 wks ago, but I sure could go for one right now. :D

I just started the florinif two weeks ago and I am feeling soooo much better. I have gained eight lbs which won't hurt me. I hope I don't put on anymore. I am also very hungry. You have to be careful not to eat too much salt and drink water to avoid the headache. When I tryed it two years ago I was afraid of it and stop taking it. I did not feel much of a difference dthen. Probably because I was on the wrong beta blocker. I think our bodies change too.

For the pill I take microgestion. I do not know much about it. I probably should take aspirn if I start smoking again. Where do you live. Iam in Wisconsin.

Dawn

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Dawn A - I am in POTS City, Ohio! I appreciate your information especially about the BC pill. I am going to look into it. Dr. Grubb gave me Florinef too but I've been afraid to take it. I am considering trying it but I also have an appointment coming up with a new doctor in April so I might hold off....not sure what to do...ughh. Anyway, thanks ;)

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Another thought on the BC pills .... I decided once I hit 40 that I wanted another option and fortunately there is a new brand of IUD on the market that is coated with progesterone.

http://www.mirena-us.com/

It is unlike the previous generation of IUDs that caused heavy bleeding etc. Because of the coating it greatly reduces your period (much like the BC pills) and for some women it actually stops any noticable period all together. You can keep it for up to five years. Major drawback is that this brand at least is only recommended for women who have had children. Something to do with the elasticity of the uterus I suppose.

Anyway it may be another option if you are looking for options.

EM

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EarthMother - thanks for the link and information but honestly since I don't believe I can get pregnant I wouldn't want an IUD. Natural progesterone cream might be a route I'll explore, but when I used the micronized progesterone capsules (one 1 200 mg dose) I didnt' quite like it....didn't give it much of a try though admittedly but not interested in taking any more either!

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Just an FYI for those interested in an IUD; some docs wont prescribe an IUD unless you've already had kids and/or have acheived a certain age (my doc wants 35+ and already have kids). Not sure if that issue for my doc is due to state regs or personal prefs.

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Jackie,

Anxiety is a big symptom for me too. It ran my life for the first four months with POTS. I worry like most POTS patients do about Shy Drager and similar fatal disorders. I guess it is going to take a few years for me to really calm down, because then I will know I am not dying. I have not taken any medication because the doctor at the VA won't prescribe any and quite frankly, I don't think I need it right now. I have learned to control the anxiety to a large extent. I can go weeks without any anxiety and then I will get a weird neurological symptom like myoclonus and it will freak me out for a while.

Coming here and hearing that people have the same symptoms, even if they are not recognized POTS symptoms, makes me feel better. I think there are many symptoms most of us share that are not recognized as POTS symptoms.

Edited by Timbo
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Hi Jackie,

I just wanted to tell you what a wonderful dr. said to me about this anxiety thing.

I was admitted to the hospital back in Sept. when this whole thing started, and I saw all kinds of doctors. Then they sent the psychiatric dr. in and she was telling me that it was anxiety. I didn't believe her because I know how real this whole horrible thing is, but what could I do. Then the cardioligist came in and saw how bad my arrhythmia and tachycardia were. And he said there is something physically wrong with you. The heart would not do this with anxiety.

Then in Oct., a cardioligist diagnosed me with Orthostatic Hypotension and Tachycardia. And he sat down with me and explained that I am not crazy. This is a very real physical condition, and it is not from anxiety. I hadn't even told him what the other dr.s had said. But I guess he knew that people with this are often told that it is anxiety. Anyway, I am so thankful that he took the time to tell me this.

I find sometimes when I am standing up too long, is when I have these "panic attacks. " , and I think it's because my brain isn't getting enough oxygen.

I hope you feel better soon.

Julie

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Julie - Thanks for posting. I'm realizing I'm not alone in that it is often written off to a psychological problem in the beginning (and I bet if we did a pole we would find most often for women...everything is written off to hysteria when it comes to women)...unfortunately, I think the treatment I at least received at the hands of doctors and ER staff and even family members in the beginning did start to cause me psychological problems and I ended up caving into meds unfortunately out of desperation. Can't look back though...have to keep moving forward so I try not to dwell on how I got here but where I'm going from here. I hope to be off anxiety meds in the future but somehow I do think they might help in balancing the nervous system for some people...I just don't entirely like them, the stigma attached, or the potential for dependence....all I can do is take it one step and day at a time right now though and hope for the best. I agree with a lot of people here though that if the symptoms had gotten under control before giving me anxiety meds (which did not help control the heart rate or blood pressure by the way) i.e. the beta blocker which finally did help...I would have easily been able to manage the anxiety because I could talk myself through the heart racing episodes before they ever gave me anything mentally just fine...now I think it will be a challenge for my body to adjust off the meds and not looking forward to that day if and when it comes...but oh well...like I said...I'd lose it if I dwelled on it as fear just feeds on itself so I am choosing not to worry about it and take one day at a time. But thanks for your insight and your experience!

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