Jump to content

mountain girl

  • Posts

  • Joined

  • Last visited

Everything posted by mountain girl

  1. While I have never had a GTT and never would agree to one, I have always been shall we say sensitive to not eating frequently enough and it has been much worse I would say since having pots. My last blood work was supposed to be fasting at 815 a.m but I felt "bad" like i had low blood sugar at 730, and ate a piece of dry wheat toast and felt better. I think my glucose report was 109, and I told the dr I had eaten the toast and why I had felt the need to.I also feel bad if I eat sweets and have not had a meal,but do not really notice a reation to eating fruit. I prefer vegetarian meals, and eat meat occassionally. I find it just works best for me to eat something every 2 to 3 hours, that way I feel I am never allowing my blood sugar to get too low and feel bad, and for pots I know it is best to eat smaller meals anyway. I go for the common sense approach to eating, whole grains, fruits and vegetables, and limited fats and sugar anyway. I guess due to middle age and less activity I actually gained 10 pounds the last two years since having pots. I have been working at losing it and swithed to G2 instead of regular gatorade but so far it has not made much difference.
  2. Yes, yes and yes again! I can relate to almost everything you said, and to lots of others who responded. The crying seems to help me even though I do not like to get to that point, I usually feel better after I have cried. This web site has helped alot, just because pots is such a weird illness, it helps to have others who understand. I like what someone responded by saying the time of day determines her mood. Me too, morning usually good, then as the day goes on its downhill after lunchtime for sure. The other hard thing for me is the unpredictablility of it,never knowing what kind of day I'll be having, or if I will get better as time goes on. I think if we knew it was a time thing where after so long it would have run it's course and we would be better, it would be easier, but that's not how it always works. I did find it encouraging after seeing several doctors who said I would get no better, there was no cure, to find a dr who said I think we can get you better, meaning improve your quality of life. I think it is good for us to be realistic yet have hope. I tell myself it is easier to think positve thoughts and try to focus on what I can do rather than what I cannot do. Now, don't get me wrong, there are many times my husband has to remind me of that. It is normal for us to miss the life we used to have.Just know you are not crazy or being emotional, it seems to go with the illness, the roller coaster of emotions. Summer is hard for me too. Living in Virginia, we have had a very hot summer so far. 18 days over 90 degrees so far, 99 degrees today and several days 100! Fall has always been my favorite season and still is. As for whining or complaining, I think this is a good place to do it, and it actually feels like good therapy for me to try to encourage others. Hang in there!
  3. I am just wondering if they are referring you back and forth because they do not know how to help you. I do not know where you live, but I would recomend going on the dinet website list of doctors and see if you can find someone who is able to help you. I live in Va. but have been traveling (my family takes me) to Pa to see Dr Goodkin, a cardio who is experienced treating pots pts. Before that I was sent by pcp to a local cardio who had heard of pots and tried to help me, but did not have much experience with it. I am so glad to have gone to Dr Goodkin because he had the experience and truly understands pots. There was also some drs listed on the dinet website in Morgantown West Virginia, that wanted pts I believe and were conducting studies there. Keep looking and trying! I think that is the best hope to having improvement in day to day life. While I am not cured, I am some better. Don't give up hope.
  4. I am a size 10 but gained 10 pounds in the past two years since having pots. I also feel my age is slowing my metabolism since I am 46 and not able to be as active. I try to eat healthy foods, whole grains and fruits and vegetables, and not much meat simply because I do not want it. Many of my calories come from Gatorade and I do not like the G2.As long as I can stay at this weight and a size 10 at my age i am not going to complain much.
  5. You are on the right track by joining the dinet website. My experience with the ER is that if you re not having an actual emergency, and they find nothing physically wrng, they are not all that helpful. I would look on the dinet website list of doctors and see who has experience in the area you live. While I live in VA I selected a cardio in PA because his daughter had pots and I felt he would be knowledgable about pots. I believe you aid you did have a positive tilt table test, if I am not remembering correctly, I would thin that to be important in seeing if you truly have pots. I saw a number of doctors too before being dagnosed and it is very frustrating. At the time, I became somewhat angry at the doctors for not feeling like they believed me, but now I think they just truly did not have the knowledge to help me. I kept searching for a dr that could. Dr. Goodkin is who I see in Pa and he has given me hope and helped me more than any dr prior to that. He truly understands and gets that it is not just in our heads. It does present a problem I am sure not to have insurance, and I don't know what to tell you there. I was somehow able to keep working, but did have to reduce my hours and go to a less stressful position. While there were some days I could barely get out of bed to do anything, I did push myself to be up for some part of the day in a sitting position. Try to take a walk even around the house if you can so you do not become more deconditioned. A friend told me you have to be your own health advocate, or have someone who can advocate for you, so keep trying till you get some answers that make sense to you.
  6. currently being managed by a cardio., but because he is so far away I am considering trying to get my internal med doc to manage me unless I have more problems. He had never heard of pots, so next time I go I am going to take him an overview of pots or asked if he has looked it up. I am hoping with the notes the cardio sends him, maybe he will understand it, but I know thats being hopeful.
  7. Yes, neck issues for me. Always acted up easily with pain in my neck for no apparent reason at first, so thought maybe I had slept on it wrong. Then several years before the pots symptoms started I noticed a lump in the left side of my nck, but the doctors I saw seemed to think it was nothing. I think it is and was a cervical disc coming out of place which finally did damage by causing pots and addies pupil in my left eye, which is autonaumic nrve damage making that pupil stay dilated and does not respond equally to light like a normal eye. The thing is I believe I have read pots can be caused by cranial and cervical instability, but how to fix it and or prevent it before it causes permanent damage. I think there are probably other things that cause pots as we have all read about, but this is one possible cause in myopinion.
  8. I don't know if I call what I experience remissions or not, but sometimes I will have part of a day where I feel "normal" and even a few days in a row where I am able to do more than usual without feeling bad, unfortunately, it does not last. It feels like a mind game to me, because I tell myself, its just a few good days, but I am always so upset when a bad day or days follow several good. As for the beta blocker, my pulse runs anywhere from 60 to 96 on the med, but I feel better when it is in the 60 to 80 range, when I wake up in the morning and feel bad, that is usually a day my pulse is up, but not always. I tried to go off my beta blocker, with my drs approval to try, so I cut the dose in half. It did not work out, first day was okay, but by the second and third day, hr was up and I was feeling bad. I am persistant, so I tried three different times, but same result, so I will accept it, but for you maybe you can reduce. Good luck.
  9. I take Bystolic 2.5 mg once a day which is a very low dose and Florinef to keep the bpup. First tried Metoprolol 12.5 mg and felt way worse. Bystolic is thought to lower bp by lowering hr, and for me as a person taking it to lower hr, and not bp which was already low, 'the florinef helps along with Gatorade. I drink 32-64 oz a day.
  10. Just wanted you to know we are here for you. Finding the most knowledgable doctor for treating your pots is half the battle, and for me the first year of the pots was the worst. Keep fighting for yourself because often times that is the only one we can really depend on, and of course the dinet web site provides lots of valuable information. Don't give up even when you feel like it, of course in all reality I have "given up " and just had to stay in the bed most of a day or two or three, but evenually I say I am going to try to do something today, even if it seems something small. I keep a journal now which helps me through the bad days, because I can look back and see there were some good ones. Here's sending you some positive vibes! Hope you will soon feel better and have some good days ahead. Don't take the positive vibes the wrong way,meaning it's okay with me for you to vent, I just hope for you. That is something the last physician I saw gave me was hope, when I had not had much before. Maybe with pots we don't "get well" , but better.
  11. MY DOCTOR MENTIONED CFS AT MY LAST VISIT EVEN THOUGH HE DID NOT ACTUALLY SAY I THINK YOU HAVE IT HE ELUDED TO THE FACT THAT IT WAS A STRONG POSSIBILITY SORRY I CANNOT GET THE CAPS TO GO OFF ON MY COMPUTER ANYWAY I THINK POTS CFS AND EVEN FIBROMYALGIA ARE ALL RELATED AND ITS ALMOST LIKE WHICH COMES FIRST THE CHICKEN OR THE EGG Fatique has been one of my main complaints. As for the CFS I would find if I did too much on days I did feel better, I paid for it later, like I would feel hungover tired as I called it the next day. So yes I think they are all related, but I am not sure it matters much with the treatment, isn't still basically treat the symptoms the best we can and find any underlying cause of symptoms if possible.
  12. I have been quite frustrated with the weight gain since having pots. Have gained 10 pounds and just do not seem to be able to lose it. Trying to walk more and watch what I eat, but it seems so hard.
  13. Iam an LPN. I thought it seemed like I read alot of us were or are working in the medical field. Stress do you think? I have been a nurse for 25 years.
  14. I also see Dr. Goodkin and my next appt is scheduled for July. At this point I have not received any phone call or letter letting me know this information. What kind of notice did you receive? I go to PA from VA and cannot make the drive myself so my family has been taking me. I saw him for the first time last Oct. then again in Jan. and since it is such a distance for me to come, we decided to go 6 mos. having me return in July. I do really hope for all of us it is not so because he has helped me more than any doc I have seen.
  15. I know at some point I read on the forum that some of pts. with pots were having difficulty with orgasms, but I cannot seem to find it now. At the time I was not really having any problems with that area, thank goodness, but now I am. Just wondering if anyone else does and what do you "blame" for the cause. I wonder if it is because I am just so tired by evening time that a physical activity like sex is just too much. I still enjoy it but it seems I just cannot "get over the edge". I know this is kinda personal, but since I had seen a topic similar to this before I was hoping someone just might say, yeah me too. I am not on any new meds, because I already thought of that and know that meds can sometimes cause that problem. Maybe we can try earlier in the day before I am so tired, but usually on the weekends, my husband wants to go do things during the day since weekends are the main time we get to spend together. I welcome your thoughts!
  16. Thank you for all your responses. I am fortunate that my DO graduated from medical school in the 1950,s. He is in his 80,s, and still practicing because he really wants to keep helping people he can help. My cardio said he was one of the top 5 docs in cranial in the country. He charges very little per session compared to other doctors. He even told me today he wants to teach someone in my family how to do what he has been doing for me so they can help me at home, because it will probably be a lifelong comitment. He had never treated anyone with pots, but looked it up on the computer so he would understand it, and I believe he does. He is honest enough to say he does not think this will cure me but he thinks it will prevent more damage and improve the quality of my life. I know some of the DO cost 100.00 a session. I paid 60.00 for the first session and 45.00 each time after. He only works three days a week now but has many regulars, and a good reputation in my area of Va. As one of yo mentioned you sometime feel symptoms when you had a massage or treatment. I also feel that, which makes me think he is "adjusting " the right areas.I just feel like I have kinda hit a plateau now.
  17. I was interested in the chest pain issue since that has been one of my main problems. While I have never taken Clonidine, it seemed other meds actually increased my chest pain that were supposed to help. I felt that my cp was worse on midodrine and on ritalin. I take Bystolic 2.5 mg. and Florinef 0.1 mg. It seemed that when I went to higher doses on these same meds that I had more cp. I always thought maybe it was in my head, but after reading others responses, I am not alone it seems. I also experience the chest pain if I lie supine after being up all day and have to lay on my side. Not that I don't have cp other times, but it seems worse then. My legs also ache when I go to bed, so I always thought it must have somethin to do with the whole circulation thing. Anyway, it was reassuring to read that some of you also have had unusual reactions to meds that are supposed to help.
  18. That is so weird because I have been thinking about getting one of the Tempupedic neck support pillows but they are fairly expensive,so it was good to see you had good results just using the inexpensive type. Hope it keeps helping you.
  19. Florinef has helped me. I had no real side effects and I have been sensitive to meds.
  20. Unfortunately, I think it is typical to feel bad. The whole first year I had pots I felt bad everyday, but somehow pushed myself to keep working because I did not want us to risk losing our house or not being able to pay our bills. On the days I did work, I would go out to my vehicle on my lunch break and lay down for my half hour. If it was hot out, I ran the a/c. Laying down for that little bit of time helped me get thru the day. On a more encouraging note, I do not have to lay down on my break anymore. Sometimes I do, but not every day. But when I get home, I have to rest. Thank goodness our children are adults so I don't have the same responsibilities some of you have. Also, the first year or so I never had any energy to do anything much other than work, and home to bed. This second year, I have actually been able to fix supper some evenings, where as before it was all I could do to fix a frozen dinner or make a sandwich after working. Sometimes I cannot even hardly explain how I feel bad, I just know I do and that I need to lay down. I also notice if I work or overdo now I am exhausted like a hangover the next day even. Now I also have some days where I feel almost normal for the better part of the day, but I want that everyday.I know everyone reacts differently to the pots, but hopefully you will feel better as time goes on.
  21. I am 46 and the dr I am seeing thinks the underlying problem of my pots is connected to "neck pain and possible cervical disc instability". However, I am definitely seeing that I feel worse with symptoms the week before my period. I am still regular, but do hope and wonder if I will notice improvement when I go through menopause and actually stop having periods.So can symptoms go away? Still hoping they can!
  22. I also have anxiety, and had it before pots, mostly exhibited by crying and getting upset easily. I take medications for it but still experience the crying some when I get overly tired or feel bad, or should I say worse than usual with pots symptoms. It helps me to come on the forum, as far as things to do, and I like to watch the weather channel and CNN news. I think the reason I like those channels are twofold. One is they are short segments I don't have to pay close attention to follow what is going on, and I feel like it helps me stay connected with what is going on.
  23. I have been seeing a doctor of osteopath for cranial manipulation therapy, which I think may also be called cranial sacral for almost 6 months. I do feel like I am able to stay upright longer and more comfortably, but still am fatiqued easily and have chest heaviness as the day progresses. I continue to go to these appts because I on the one hand think it helps, but on the other hand, I am not sure. I have had pots for about 2 years, and the second year has been better than the first. Is there anyone else out there doing cranial manipulation and do you think it has helped you?
  24. Grape gatorade, coffee or a latte occassionally in the mornings, and sweet tea when I get sick of gatorade, but mostly just the gatoraade.
  25. I saw a therapist once, because it is difficult living with a chronic illness like this and I just wanted an outsiders oinion if I was dealing with it in the healthiest way possible. He was nice and seemed to think that I was, and that being a part of this forum support group was a good way to cope. I didn't feel the need to go back. So for me, the forum is the therapy I need when I need it. Not only therapy, but company and so many people who truly understand this unusual disorder.
  • Create New...