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Heckofagal

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Everything posted by Heckofagal

  1. Yes Rose11 I will wait until after the interview, but if I'm starting a new job that won't be good either. I've been to many doctors over the years, general physician, cardiologist, naturopath, sleep study, neurologist. Nobody knows why I still have issues. I have high blood pressure and hypothyroidism, but that does not include why I still have so many issues with dizziness or just feeling off. This is exacerbated by heat, or noises or lights or patterns on the wall or floor. The heat intolerance is a big one. I try to avoid outdoor activities during the summer, but walking into an office that is a bit warmer messes me up, and I work on a floor that is ceiling to floor Windows, and simply walking to a co-workers desk that sits by a window messes me up. I know i look odd as I try not to pass out (never have, but that is how I feel) but I can't keep explaining to everyone, especially when I can't explain it to myself. I think it is autonomic in nature, that is why I sought out Dr Kinsella.
  2. Sorry to bump this old thread but it was easier than trying to provide all my history here. I was supposed to see Dr. Kinsella back in Dec. But I went to my appt only to learn it had been cancelled. The office tried to leave a message for me, but unbeknownst to me, my answering machine was not working at home and apparently they did not have my cell phone number. So I had to reschedule and wait another 4 months to get in. (I was devestated to say the least.) Finally got in to see the doctor this week. I gave my history, did not say I was here because I think I have an issue with my autonomic nervous system, but in my history I also noted that my daughter was diagnosed with autonomic issues. My BP and pulse were taken while I was laying down and then several times when I was standing up. I have white coat hypertension so my BP was elevated, but not too bad, and I think it was pretty consistent each time. The doctor did his exam and told me my issues are caused from migraines. I know migraines aren't always the headache kind, but I don't even get regular headaches much. He said he wanted me to start taking Topomax, and after ramping up to 200 mg if I don't see a 50% reduction in symptoms he will try something else. He mentioned that Topomax also helped people lose weight, and that could help my issues as well. Yes, I would like to lose some weight. It is not the root cause of my problems. Also told me to start a rigorous exercise program. He did not mention automotive issues and for some reason neither did I. Perhaps I was so shocked or disappointed. Or perhaps I don't want to be that person going in to the doctor to say "I've been on the Internet and I know what is wrong with me". I'm fairly certain my issues are NOT migraine in in nature. But from what I read about Topomax it is used to treat several issues so I;m willing to give it a try. He did say however, that the nickname for the drug is Dopomax, because it can cause cognitive impairment. Great! So I told him I had some testing to do on Wed so I would wait and start taking it We'd night. Well my testing went well Wed and now I have an interview scheduled for April 28 so I will wait until after then to start taking it. But if I start a new job I'm also concerned about cognitive impairment as well.I know it's never a good time to start but maybe I should wait a month or 2 until I get thru training? Yes, I want to see improvement now but Lord knows I've already dealt with this for years, and I don't want to screw up a chance for a good job. Any thoughts or suggestion?
  3. MomtoGuiliana - Yes, my naturopath treating my Thyroid issues wanted to put me on Armour years ago when I first started seeing her, but she understood my reluctance. And we have discussed it several times since then. At my last appointment she said when converting people over she likes to do it in stages instead of all at once. And my TSH has been suppressed for years since I am on T3 meds. .01-.02 and I am not hyper although I had hyper symptoms last year so we titrated down. Now we need to titrate back up. And I think that stuff about natural thyroid meds being unstable is a myth. Kellygirl - I'm so sorry to hear of your struggle. What meds have you been taking? Do you fluctuate between hypo and hyper? How can the endocrine team be sure that the autonomic dysfunction was not caused by the thyroid? It seems coincidental that the symptoms emerged when your TSH reached. I appreciate your responses!
  4. I was just wondering if anyone on here has discovered that hypothyroidism is the cause of their dysautonomia symptoms. I was very, very sick in the fall of 2006 and it was discovered that I was hypothyroid. My biggest issue was with dizziness. I know my TSH was 7.1 then but I'm not sure what my Free T3 and Free T4 numbers were. Synthroid, blood pressure meds and acid reflux meds helped me feel better, but I could tell there was still something wrong. I found a naturopath who added Cytomel, B12, Vitamin D, adrenal supplements and tweaked my meds to bring me back to mostly normal. I've had issues on and off through the years and have had meds titrated up and down. Always very sensitive to med adjustments and reluctant to switch to Armour or another Natural Dessicated Thyroid med, but I've considered it many times over the years. That brings me to now. Have had many bad days lately and reaching an all time low. Had my thyroid numbers checked in July and my numbers were probably the lowest I've ever seen them since I started tracking in 2007). FT4: 1.0 (.8-1.8) 20% FT3: 3.0 (2.3-4.2) 36.84% All the thyroid forums say I need to be in the upper third of the range to feel optimal. I'm wondering if the 20% and 36.84% are bringing on my dysautonomia symptoms. I'm thinking about having my meds changed to NatureThroid.
  5. So on really bad days is it best to sit on the couch and try to recover? Or to push yourself to get some exercise? Really bad day Sunday resulted in me not moving much from the couch the rest of Sunday all of Monday. Today too scared to try to go back to work. Not sure if I sit here and try to recoup or try to get some exercise.
  6. Thanks or the replies. I guess working full time might be the only thing I can do for a while. I feel so helpless.
  7. Fairly new here, not officially diagnosed, appointment with specialist is not for over 3 months. Have had a pretty rough 3 weeks, with lots of dizziness or presynope which seems to be my biggest issue. Every day at work is a struggle to not pass out (If I even make it to work). The anxiety and battle all day are exhausting and by the time I get home I crash and sit on the couch until time for bed. Some nights I have stuff I have to do so I push myself to get them done. Weekends should be spent on the couch as well, but life has other plans and I try to do what I can to get out and find some enjoyment in life. This past week was especially rough. Monday was a holiday so I stayed at home, Tues - Thur I worked from home and Friday I worked in the office, but it was tough to hang on all day. Came home and sat on my couch that night. Saturday I seemed to be feeling pretty good. So this is how my day went: Woke up at 6 to make sure my daughter was awake for work and then I ended up taking the dog outside and making my daughter some breakfast and never went back to sleep. Had an appointment at the bank at 9 am to take care of some financial stuff, not there long. Stopped at the pharmacy to run in and get some meds and couple other items. Stopped at Chic Fil A for breakfast, then did a bit of shopping in Target. My hubby had a haircut appointment at 11:20 so I waited in the shop for him. Then we went home and I sat on the couch for a good while, and had some lunch, watched tv, My daughter had homecoming that night so around 3 I stitched up a seam in her dress that was splitting, then I helped her a bit with her hair and make up. Went for group photos at 4:30 and I did well walking a bit in the park (not much at all) and did not seem dizzy at all. The girls went to eat at TGIFridays at 5:30 and some parents had to drive some younger kids and friends of ours were staying for dinner so we did too. I did well in the restaurant even though the noise in that place normally makes me dizzy. It was nice being out socializing and I started to think maybe I was on the upswing, maybe I could get my house cleaned up again over the next couple weeks and could have some friends over down the road. Maybe I could even put up our Halloween décor. Came home and cleaned up the dirty dishes in the kitchen that had been piling up and then sat on the couch for the rest of the night. Did get a call about 9:45 from the school and of course that scared me a bit. They were calling to tell me my daughter overheated and passed out on the dance floor. She did that once last year too when they went out to play tennis on a very hot day. I'm hoping she was just dehydrated and not on the same path that I am on. Anyway, I felt like yesterday was almost a normal day. Today was a whole different story. I got plenty of sleep, got to sleep in until 9:00, got up and had a bowl of cereal and sat on the couch for quite a while. My husband wanted to go out for pizza for lunch so we went around 12:30 and when I walked in to place our order I was immediately very dizzy. (I struggle at the counter of this place normally.) Anyways, I tried to just ignore the dizziness as I have never actually passed out, but I think I almost did too. By the time I signed my name on the credit card slip I was shaking and very fuzzy. My husband came in and could tell I was not well so he got our drinks and made me a salad at the salad bar. I thought once I sat down I would regain my composure but my anxiety was already torqued and I was dizzy as ****. So he got the pizza to go and we went home and I sat on the couch some more. Started feeling better this afternoon so we both went to the grocery store to buy a few things. I walked in and immediately walked back out as I never would have made it walking through the store. So I sat in the car while he tried to shop with my list. Came home and I've been back on the couch. So looking back, I guess I overdid it yesterday. But how do you know when is too much? I have so much to do around the house and I barely did any of it and look where I am now. When is it too soon to try to start an exercise routine? I was really optimistic yesterday when I was feeling better and now today I am so depressed again. I don't know if I should try to go to work tomorrow, but I also can't afford to lose my job as I've missed several days lately.
  8. And does meclizine or any other meds help with this dizziness?
  9. So I think I've been dealing with this for years, but not officially diagnosed. Cant get in to see the specialist for months. Symptoms have really gotten bad this past week or 2 and I struggle at work every day. I'm dizzy all the time and I'm afraid every time I get up to use the restroom, or go to the copier/printer or to the breakroom. I haven't really discussed this with my too busy boss, but I sent him an email tonight to let him know what is going on, and to tell him I am trading spots with another co-worker to try to help. (I currently sit up against a wall of floor to ceilings windows and the heat and light from the windows is too much for me to bear.) I struggle with high blood pressure so the salt dosing won't help. I'm not sure if extra fluids would help me or not, but I've been trying to increase. Go to bed early when I can. Any breathing exercises or anything else to help with the dizziness/anxiety? Feeling hopeless and need to work.
  10. Thanks for your reply Fitnesskelly - I know I have a thyroid issue, and have also been told Adrenal Fatigue. I take a nice size dose of thyroid meds and adrenal supplements. However, I am very sensitive to med dose changes and while going through those changes more susceptible to the dysautonomia symptoms. I've been dealing with this for years and figured it was more than just my thyroid, but I've been to regular GP, naturopath, cardiologist, sleep study, appendix ultrasound, head CT, adrenal MRI, ENT-neuro and nobody is finding anything. Ive been tested for Lyme, and it came back inconclusive as the bands I tested positive for are not clear indicators. (???) Took a hard crash this time and I am just not bouncing back like I normally do. I'm exhausted all the time, feel like passing out everyday at work, can't hardly walk through wal-mart anymore as the lights make me feel weird, and loud noises in restaurants make me very uncomfortable. It's funny you mention hemochromatosis. My brother has this and my siblings and I were all told to be tested. I tested positive for a single strand mutation but from what I understand you have to have double strand mutation to have hemochromatosis. However, my iron tends to run on the higher side, I am never anemic.
  11. I don't know if I am supposed to mention names here, but Dr. Kinsella is not far from me and that is who I am going to try to make an appointment with. It just concerns me that most of the tests to diagnose this disorder mess with my blood pressure when its already going to be volatile. I feel bad after a normal dr. appointment just from the spike in BP from the white coat hypertension so I'm sure this testing would put me on my *** for a few days.
  12. Bumping my original thread because I'm back here again and I'm 100% sure this is where I need to be. I never received treatment or confirmation of Dysautonomia but the more I read here the more I shake my head "yes". I'm still adjusting my thyroid meds. Have become hyper 2 different times since this original post and had to titrate my meds down and now I need to titrate back up as I am very low in my Free T3 and Free T4. And I am always very sensitive to thyroid dose changes so that could be the reason for my increase in dysautonomia symptoms, but none the less I know it is not just thyroid symptoms. Since the decline of my health I have struggled with handling stress and of course there has been plenty of that lately. In Dec 2014 I was laid off for the 3rd time. And though being off work for a few months may have had some benefits, the stress of looking for a new job, interviewing, rejection after rejection, and worrying about paying bills has not been beneficial. Add to that being the mother of 2 teenage daughters, the death of my dear brother-in-law in April, starting a new job, a dear friend's husband getting a death sentence cancer diagnosis, thyroid med change and added job stress and its been a rough few months here. Heat intolerance is at an all time high, maybe because its the end of summer and I've had enough 100 degree days. And my new desk at work is right against a wall of floor to ceiling windows. The heat alone everyday is enough to make me feel like passing out, but even when it is not super hot in there, I think the glare messes me up a well. My husband and I took my daughter to college 2 weeks ago, and I did well that day with helping to carry her things in the dorm, and even though it was super hot in there I stayed all day to help her get settled. We took her on a Friday and I knew I would have 2 days to recover before going back to work, but work has been stressful and after a day of the normal not enough hours in the day this past week I had a hard crash. Then my friends husband ended up in the hospital and at the time she needed me most I...just....could.....not.....go..... And my friends have been on me for years to find a new dr. so all that spurred me to come here and get help. I've found a dr in the area to go see, I just have not made the appointment yet, but I will this week. My question is this - I have horrible white coat hypertension. I already take meds and occasionally struggle with high BP and my current dr. understands this. She knows I monitor at home and I have kept a log for her in the past, but after a few years she has just come to realize that is how I am. But how in the world would I ever do a Tilt Table Test??? I've gotten in the habit of taking an Ativan before my apt but it can still be around 180-200/100. And this is going to my regular dr., I can't imagine what a new dr. will be. I also told my regular dr. that my symptoms are waaay worse right before I start my period so she decided to check some other hormones this last blood check and my DHEA came back very low, so she told me to start taking 10 (mg or mcg?) per day in addition to the synthroid increase. I tried the DHEA at the same time and I was super dizzy so I thought I would wait a few weeks and try again. Well, its been over 3 weeks and I tried again and I am super dizzy again today. I don't want to take it on days I have to work if I will feel like this? Should I try to open the capsules and take half a dose? Thank you to anyone who has taken the time to read this!
  13. Well I have not been diagnosed with Dysautonomia yet, but my symptoms keep leading me to this site. I was diagnosed with hypothyroidism about 7 years ago, and a naturopathic doctor helped get me back to health with a combination Synthroid and Cytomel and other supplements. I've had a few ups and downs over the years and have really struggled the past 2 years or so, having 8 thyroid med increases. It is my understanding most people feel best when their FreeT4 and FreeT3 are in 60-80% of the range and I seem tobe close, but definitely not feeling great yet. Currently I am taking 200 of Synthroid and 17.5 of Cytomel daily, along with adrenal supplements,Prevacid, metoprolol (high BP), b12, Vit d, magnesium and melatonin to help sleep. Many of my symptoms are better, but many days I just feel like I could pass out.
  14. Thanks for your replies. Leydengs-I don't feel lightheaded when I stand up, I just feel 'off' all the time. Sometimes it is worse than others, but I can even feel that way sitting. I do spend a LOT of time on my couch, but I think that is just from feeling like crap all the time and the fatigue. And I've never been tested for POTS. I have horrible white coat hypertension. It is sky high EVERYTIME I see my dr but she understands and just confirms I am occasionally testing at home. Not sure what a doc testing for POTS would think. Targs66-I am certain I am hypothyroid, I'm just not sure if there is something else going on too. There is no way I could be taking the meds I am on now if I were not hypo, it would surely send me hyper. And the symptoms were all before I started meds, and many have been relieved by going on meds...I just know I'm not 100%. (Ok, I'd settle for 85%). I've been told I also have adrenal issues. Taking a supplement to help with that and tried a short course of cortef and that did not really help. I guess I should see a dr who specializes in dysautonomia...but will he be focused on dysautonomia only? What if I have CFS or Lyme disease or something else I have not even considered?
  15. Forgot to add that this year I also developed severe heat intolerance. Being in the heat made me feel awful and that used to never happen.
  16. Hi all. I'm sorry if this post gets longs but I've been struggling for a while and need to find some answers. My journey has brought me here but I'm not 100% sure I'm in the right place so let me start at the beginning and get some opinions from you all, if you don't mind. My health issues began 6 years ago, when I was 38. My husband and I had taken our 2 daughters to disneyworld during their fall break. It was a very fun but exhausting trip. I kind of stressed myself out even before we left trying to make it the perfect trip, buying all the Disney gear we would need, making us all matching shirts, all the packing etc. And after spending the full week trying to do as much as possible, walking many miles a day, I was whooped. Came home with blisters on both feet and a stress fracture in one foot. Then shortly after that I was helping out with my nieces wedding and half the wedding party had the stomach flu. I kept thinking I was getting it too as I just did not feel well and really had no appetite. But I just felt that way for a couple weeks and never ended up with the stomach flu. Finally went to the dr on 11/8 and at that point we thought I had a "smoldering appendices" as I was also having a dull pain in my appendics area. I also had high BP that the dr. said could be a result of me being sick, and I was prescribed a beta blocker. He sent me for an abdominal CT and bloodwork. We discovered my appendics was fine but I was diagnosed hypothyroid with a TSH of 7.1. Let me just say at this point I KNEW something was terribly wrong and I SERIOUSLY thought I was close to death. I was started on 75 of Synthroid and within a within a day or 2 I was feeling worse, more dizziness and anxiety and a added choking sensation in my throat. My symptoms at that point: dizziness, insomnia, sudden anxiety issues, indigestion, tingling in extremities, brain fog, spikes in BP, heart palps, ear pressure, pain in lower right abdomen, pain in upper back, hot flashes, and problems getting eyes to focus. I ended up in the ER thinking I was having a stroke or heart attack, but tests were OK and I was sent home with a diagnosis of acid reflux. After that I started to improve a bit. By February I was still not feeling well. Had an adrenal MRI to rule out pheochromocytoma (my dad had an adrenal gland removed for this) and that night I ended up in the ER again as I had a bout of double vision. Head CT showed no issues and i was sent home. I decided to see an endocrinologist as my general practitioner was telling me he could not find anything wrong. Endo said my numbers were in range and to go back to my GP as if I was still sick it was not my thyroid. I decided to find someone who would listen and went to see a naturopath I found on the top thyroid docs list. Someone finally listened when I said I was still sick. I showed her my labs that had been run and she told me my B12 was low enough they would recommend injections. I asked to try supplements first and she agreed and I was amazed how much my first mega-dose helped. I woke the next day and my vision seemed so much sharper. And my tingling gradually went away. I think I was also started on adrenal supplements at that point too as we'll as Vit D and a probiotic. And at some point we tested my hormones and I was started on progesterone cream. She brought me back to health. I don't know if it was all the additional supplements or if my body finally got used to the thyroid meds but I actually felt great by early May. I remember one weekend getting my whole house cleaned and going for a bike ride with my family and outlasting my 2 young girls. I was crying tears of joy. Over the next 4-5 years I was pretty good. Needed some med adjustments here and there, and we added some cytomel, but nothing major. Had a little setback in 2007 when we went back to Florida again but I think I stressed myself out again before we left as I felt faint before we even left . Felt a bit rough on the trip and found my FreeT3 was too low and felt better after it was adjusted. I had some life changing stressors before my thyroid went haywire. Severe marital issues that almost lead to divorce, layoff from my job and unemployed for about 6 months and my mother was diagnosed with lung cancer. I dealt with those stressors ok but my dr seemed to think it took its toll on my adrenals and thyroid. And as I said I did pretty good for a few years after finding my naturopath. Then more life stressors. Another layoff and another 6 months unemployed before I found a temp job paying considerably less, helping my aging parents who both were having health issues, death of my mother which lead to putting my father in a home and he passed away 9 months later, a dear friend being diagnosed with colon cancer and passing away and a brother in law being diagnosed with a leukemia. Add to that the typical working mother of two girls stress and I guess I began to crack. A little over 2 years ago I started having the lightheadedness and anxiety issues again. My dr gave me another thyroid med increase and started suggesting anxiety/depression meds. I've refused these all along as I felt like my issues were medical not psych and being overweight I did not want to gain any more weight as I know that would lead to more health issues. So fast forward to today and I am looking at my 7th thyroid med increase in the past 25 months. I went from 112 Synthroid and 5 Cytomel to 200 Synthroid and 20 Cytomel. My FreeT3 is currently around 80% of the range but I can't seem to get my FreeT4 above 50% of range, but I'm hoping this next Synthroid increase will. I've also had elevated ReverseT3 but just got that back in range although it is high in range. If you are still with me (THANKS) here is my question. A lot of my issues seem autonomous in nature. Do you think it is something that can improve once my thyroid numbers are better? I have issues all the time with lightheadedness. Have never fainted but some days I feel like I am about to. I've also had issues with fluorescent lights. Some stores really seem to bother me and some doctors offices are an absolute nightmare. I've wondered about an inner ear problem and I went to a neuro-ENT, but that went nowhere. He said he thought I had some viral something that affected my middle ear and gave me vestibular exercises to do. I also have issues in restaurants or malls or places where noises seem to bounce off the walls. In the past I have felt like my digestive system has completely shut down but things are pretty good in that dept right now as long as I take my magnesium nightly. And I am plagued with fatigue. I am almost always in bed by 8:30 or 9 and have to struggle to get out of bed by 6 or 6:30. Hardly ever cook or clean anymore as the couch is my best friend. Granted I am feeling better than I had been, but I am still not right. I would have made an appt already with the dr. ChristyD has mentioned but I keep going back to the fact that my thyroid has taken such a dive that I still wonder if this is all thyroid related, and just needs more time. My family is concerned for me and my friends are fed up and don't trust my dr. But my dr seems to understand that you need to be in the upper range with your free Ts and not just 'in range'. I also wanted to mention that my 60 year old sister had some sort of spells when she was in her thirties (I think) and her grandson has some sort of mitochondrial disease. His dr has mentioned that her spells might have been related to mitochondrial issues but I did not get the specifics. Her issues went away and she is perfectly healthy now. Her grandson's prognosis is not so great. He is very delayed and they say kids like him don't make it past their teen years. Thanks!
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