mountain girl

For those of you who have been on this med, did you notice improvement and if so how long? Anybody have a bad effect from med? I just started this on Sat. 3 times a day. Sat I felt pretty bad, Sun was better, Mon and Tues not so good, so I feel sure it is not helping me yet, but it could be just a few bad days, because that happens sometimes. I was going to at least try it for a month unless I keep feeling worse. It is also a little hard to know because of starting the cranial manipulation therapy on Monday if it is the therapy or the drug. I have been checking my bp and hr and they are good, around 110/60 and hr in the 60 to 68 range.

I understand your concern, and all I can tell you is when I was started on Bystolic [beta blocker] to lower hr it lowered my bp so much that within 2 days I called the dr to tell him how much worse I felt and he added Florinef which helped me be able to tolerate the Bystolic, so perhaps these 2 meds are things that help balance each other out. I often wonder since the meds seem to "counteract" each other how they could possibly help, but I felt for me they helped enough to stay on them. Good luck. You could go on and start both as your dr ordered and if you have problems, call him/her and based on what you are experiencing he may know how to adjust or eliminate a med.

I am 46 and was diagnosed about a year ago at age 45. Like someone else mentioned, I feel much older now than before pots dx. For us women in this age group, I wonder if menopause improves symptoms any or if there is no hormonal connection.

I just started cranial manipulation, Midodrine, and found that my iron level is way low, so will be starting a ferrous sulfate. In the long run I hope something will help, but right now I feel very tired and know the cranial manipulation can make one feel worse before better. Anyone else been through it? The dr. that does the cranial manipulation is very experienced and thinks he may be able to help reduce my symptoms, but after tx my body trembled and I felt lightheaded and nausea, which is supposedly "normal" when the body adjusts to the realignment. I have another session Thursday, and hope it is not as bad afterwards this time. Thanks for listening!

I see a definite connection. I feel better on about 12 hours of sleep. I also feel really bad if I travel even in a car. Long trips even 2 or 3 hours seem so tiring. Hope you can get some good sleep tonight.

I was very dedicated to exercising for about two months after the dr suggested it, but I had always been active before I got sick. I was using a elyptical machine and started at 2 or 3 mins to 15-20 but after two months, I could not tell that I felt any better. I am able to work, and my job requires alot of walking, so I feel that is all the exercise I can handle.I do take the steps at work some for exercise, but it seems exercise is good but not too much or too strenuous and each person has to find what it right for them.

Interesting, because I too track my pulse and bp, especially when I am starting a new med or dose change. I have a pots dx based on positive tilt table test and numerous other tests to rule things out. My hr and bp are mostly normal now, but I too experience the extreme fatique , jittery feeling, and sometimes nausea and lightheaded/dizzy feeling. I am glad the hr mostly stays normal but I was like you in that if that is the case why don't we feel better?So if it's any consolation to you, I know exactly what you mean.

My hr supine before meds at the tilt table test was 64, but shot up to 120-130 standing, with activity it was 170 and up. Now on meds, it ranges from 59 to 80. The meds keep it down most of the time except with stair climbing or too much activity. My bp varies alot 90/50 to 128/80.

I do have someone who comes every other week to clean. I still work outsside the home so this really helps me. I told my husband I thought I could do it now, but he wants to be sure I continue to feel as good as I can, and the last time I vaccumed I felt pretty bad afterwards. I was not sure we should be spending the money on it either, but it is worth it to us. If you find the right person and can check references or a referal from friends is how I found mine, it becomes easier to have someone else in your house.

I have not actually had it yet, my appt is Monday Nov. 2 but I googled it to try and understand it. I can't say I really understood it after reading it but google it and see what you get from it. It did say some doctors do not believe it to be helpful, but since Dr. Goodkin and Dr. Rowe both have seen results from it I am willing to try. It is not invasive and somewhat like physical therapy if I understand , that if something in the body is out of "place" it is manipulated back in. I will try to post another reply mon after seeing the dr who does this.

I found this all to be interesting because I have the pots dx and fibromyalgia dx a few years before the pots developed. I wonder about the chronic fatique but both pots and fibro can cause fatique. I sometimes feel well rested after sleep and some times do not. If I do too much activity like work several days in a row or travel I feel what I call hung over the next day from being so tired. Wonder if they are all treated the same? My dr. did seem to know about the connections but did not go into detail, although it was my first visit with him.

My dr. just added Midodrine to my pill "cocktail". I too wonder why since my bp bounces around from day to day from 90/50 to as high as 128/80. I did not think to asked while I was at the appt. but I did look it up and it is hard to understand, but does something with the vasoconstriction toning or something. Fatique [extreme!] is probably my worst symptom now and just feeling like I have to lay down after just a few hours of being up, so I wonder why this drug helps, but I am willing to try. Any additional info on what to expect would be appreciatied.

I just saw Dr. Goodkin yesterday and he recomended the cranial manipulation for me as well. Since I live in Va. he went on the internet to the Cranial Academy.com and found a osteopathic dr where I live. He said the thing to look for on the web site is that they do 100% manipulation as opposed to a lesser %. I have an appt on Monday Nov. 2 to talk to the osteopath and have it done. Dr. Goodkin seems to think he has seen people have good results from this and said Dr. peter Rowe from John Hopkins also is recomending this type of treatment. He also gave me a prescription for Midodrine 5 mg three times a day. I am a little scared of a new med. Any experiences?

Thanks for doing the poll. I always like to see how my experiences compare with others and a poll makes it kinda fun and easy to see at a glance.

I have been told by a dr. that I have fibromyalgia. Started a few years before my pots. I take a sleep med because he felt a good nights sleep was one of the best things I could do for my pain and fatique. I do not like pain meds so I only take tylenol occassionally. A friend who has fibro says she takes 4 Flexeril every night. She sees a rheumatologist, but does not have pots.

While I don't have much to help with this, I too experience the vision problems. I had made the connection that when my eyes feel "bad" I also feel bad. Not only do I have the vision issue, but I also feel pressure like behind my eyes at times. I also have the Adies pupil and my sight is worse in that eye. The eye dr. said it was because I have near sightedness and farsightedness in the left eye. My eye dr said to increase the magnification of my reading glasses to see if that would help, which may help some but as someone else said, rest probably helps the most.

Thank you to everyone for your helpful experiences and info. I will continue to try and decide what is best.

Thanks for the info. I just read another post about Erik I believe and security work. Alot of people on that topic seem to say just keep pushing as long as one can.

I have been strugling with pots and the extreme fatique for about a year and a half. I called the social security office to ask about applying for disability, and was told I could not make more than 900 dollars a month for so long before applying. Right now I make more than that and while part of me wants to keep working another part of me feels it just consumes me. I no longer work full time, and my hours per week vary. I am married but we need for me to have some money coming in to help with the bills. Prior to becoming ill, I often worked a part time second job for fun, [or fun money], like to take a special vacation,and as weird as it may sound, I loved working and doing different things. If I did not have a second job, I would work overtime when needed at my regular job. I guess I feel like I need people to know its not that I don't want to work, its just so hard to get through a six or eight hour workday now. I did mention it to one of the doctors I was seeing and she said we needed to continue looking for "a pharmacolgic solution and lifestyle changes." I guess she meant meds and to me lifestyle changes basically means you can't do much. I do believe in the salt and fluids, trying to walk more for exercise and have always been one to get eight hours of sleep a night, which is now more like 10 or 12. Any experiences you have to share or helpful advice? Thanks!

Hi Like many of the others, I am not homebound, but home alot. I would love to chat on line any time. I work part time as a nurse and feel fortunate to have a husband and two grown daughters still at home with me. My husband is gone alot for his job, but I look forward to when he is home, and my daughters try to take me places when I want to go. I think it is great that you have a hobby like knitting. My daughter just told me the other day I should start crocheting again. I used to do it when I was younger, then got too busy to have hobbies, but now I have time again. I thought maybe it was just me, but I see it is not, that mostly I like to stay at home now. I used to be on the go all the time. Yesterday was a good day for me so when my husband called on his lunch break, I could tell him I had been out all by myself! Doesn't happen very often. I was only out to get gas and look around at our local warehouse store, but it was still fun. They had the new Christmas trees out for sale and Christmas cds. I love Christmas music. We moved several months ago to accomadate my illness, so now we live just blocks from the mall, restaurants and grocery store,so even though I do not go out often alone, it is easier for someone to take me or convenient when I can go out for a short errand. I have read that some people are like you and feel better at night, but I am like one of the others who responded and feel better during the day. I sleep about 10-12 hours a night, then have a morning routine. I like to get up and have coffee and oatmeal or toast, and watch the news and good morning america in bed, if I am not working. I also spend alot of time on this website because I learn so much! It is so helpful to read that others experience the same feelings as I do. I also am a faithful watcher of General Hospital [soap opera]. Hope comunicating online will provide some of the friendship you are looking for.

Yes, good point. I cannot specifically tie my pots to post viral infection, although I did have sinusitis 3 times between 12/08 and 6/08 when I started with symptoms. I had just started a full time night shift job and that is originally what I blamed my extreme fatique on and then very soon after started with the tachy episodes and feeling like I would pass out. By July 1 I stopped working nights but of course the symptoms continued. I had never heard of pots before either and had been working in the medical field for about 25 years. The whole thing is jut so wierd. A doctor friend whose wife has CFS and was somewhat knowledgeable about pots said his opinion was the virus thing is a theory and we do not really know for sure what the cause is. I know from someone I met with pots who has a dr in the family that there are ongoing research studies on pots, but it never seems to make news. Since pots seems to be so unknown and it is so hard to find drs who understand how to treat it, I wonder how they ever get enough data for research.

Dear Thankful, {and everyone else who responded} I am sorry you were/are feeling so down, and glad some of the others here can cheer you up a bit with our stories and total understanding. My husband and two grown daughters really seem to understand the illness, but I don't think anyone can understand it like those of us that have it and live with it every day. I also am a nurse, and stepped down from my position to work as an aide in an assisted living where I had been working as a nurse, It is less stressful, and while I am glad to have somewhere to go and feel productive, I do not find I enjoy it like before because it is hard to work when you do not feel well. I was comforted by the fact that so many others feel as I do, lost as you put it , at times. I was never much of a t.v or computer person before, but now that is what I do because other than working, I have no energy to do more. For you it does seem to be a double whammy because you want children so bad. I hope and pray that you and your husband will be blessed with a child or that your health will improve enough for adoption. I had a friend who took in two beautiful girls from the foster care system and ended up adopting them, now that I think about it I had two different friends who did that. One had the children as very young kids that were still in diapers and the other friend had the children when they were in grade school, so I would think there may be opportunities for you there if you do not conceive. I do not remember how long you said you have been dealing with the pots and being off work but I am thinking you said about a year. I have been dealing with it just a little over a year, and I think it takes time to adjust and come to terms with everything.I think volunteering at the school sounds like a great idea and I am glad you have that. Another thought on your nursing, if you were able, private duty nursing might be something you could do with a home health agency or volunteer to stay with someone through your local hospice program. Often times volunteer work can lead to a job, even if you are not working as a nurse you can work as a sitter in my state without being licensed,because you don't do any clinical skill type duties. Just a thought. Also, I think part of the reason I can still work, is my place of employment has been very accomodating. I work shorter shifts and not too many days in a row. Reading other replies to your topic was encouraging to me as well. I accept the good minutes, hours or days,however they come but I still find it so disappointing when it does not last. You would think I would get used to it! As for the denial thing, yes I do that sometimes too, just what ever I can to get through each day. For what it's worth, I think I am somewhat better than I was a year ago when my symptoms first started and before my diagnosis. I did have a relapse this past April but felt I knew a little more about listening to my body and not pushing it too much after. It seems to me there is a fine line between pushing ourselves to do what we can each day, but not overdoing. I am glad you made a post on this topic of acknowledging how we all feel sometimes.Hugs and blessings to you.

Glad you shared your story, and yes it was cute and interesting. I did not know that there were different types of "weed"[easier to spell than mara...]Your state has been ahead of the rest of the country on using it for the medicinal purposes. That would be so cool to not have to take pills and to have one thing to feel better.

I do not really notice the bathroom issues, but I do get the dizzy, lightheaded and sometimes nausea and jittery/trembling feelings. I kind of thought that it was weird I would get the symptoms since the meds I am on keep my hr and bp in a pretty good range most of the time. I am assuming with pots, even if the hr and bp are good on meds, it must be a stressor on the body just being upright and doing simple things.

The Dr. I had been seeing for pots did tell me that if a patient with pots gets sick we tend to feel worse and it takes longer for us to get over it. Hope you feel better soon.