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Everything posted by Rachel

  1. Hi everyone, thanks so much for the replies! We haven't made a decision yet about moving, but it is something we are still considering. Sarah, last year was a very tough year for me physically, but I have had some improvements in the past few months, and I am so grateful for that. My migraines have been lessening in the past two months. They do still flare up with too much activity, not enough sleep, or too much noise, but they aren't as bad as they were last year. I'm not sure why the migraine symptoms have improved (I'm doing the same treatments I was last year), but I'm glad they have! Katherine, thanks for the information. It is interesting that it takes so long to adjust to high altitude. I guess travel would always be hard since it would probably involve going to a lower elevation and then having to reacclimate to the higher elevation. But at least I know to be prepared for a difficult few days anythime I would return home to a high elevation. Bigskyfam, that is interesting that Montana is so much harder for you. I'm so sorry! Is it humid where you are? Does humidity make a difference for you?
  2. "I have learned to kiss the wave that throws me against the Rock of Ages." Charles Haddon Spurgeon

  3. We are considering moving to a city with a dry climate and an elevation of 7,000 feet. I have never been at a high elevation for more than 2 or 3 weeks at a time. I know how it impacts me in the short-term, but I'm not sure how it would affect me after a few months. Have any of you moved from a low elevation to a high elevation? How did you handle the transition? Did your body eventually adjust okay? If the place you live in is also very dry, I'd be interested to know how the dry climate affects you as well. In the first couple of weeks at a high elevation (5,000 - 7,000 feet) I have a higher heart rate and lower oxygen saturation. The first 24 hours are especially hard. I get very tired, sleepy, short of breath, my lungs hurt, and my oxygen saturation stays at 93% while resting. After a couple of days it improves some, but my saturation rates still drop to 95% with activity. Although 95% is considered to be in the normal range, I always feel more tired when my saturation levels are at or below 96%. Even while resting at a high altitude, my oxygen saturation doesn't get back up to 99% or 100% like it is normally for me. I have never lived at an elevation above 1,600 feet, and I'm not sure how a high altitude would affect me long term. The area we are considering moving to would also be very dry. I have lived in a very dry climate before in Alaska, and I handled that pretty well. My gastroparesis wasn't as much of an issue back then, though, so I'm not sure if I will be able to orally take in the fluids I would need to live in a dry climate again. There's no real way to know how a high altitude and dry climate will affect me long term without moving and seeing how it goes. But if anyone can share their experience of moving to a high altitude and/or living in a dry climate, I would be very grateful! Thanks, Rachel
  4. Hi Stevenautique, I'm curious to know if you made the move to Colorado and how your wife is doing. If you did move to Colorado, did your wife eventually adjust to the elevation? Has she been able to stay hydrated with the dry air? And has her body been able to adjust to the lower level of oxygen in the air? We are considering moving to a high altitude city, and I am looking for information about how high altitude affects people with dysautonomia long term. Thanks for any help or personal stories you can share. Rachel
  5. I'm sorry that this pregnancy isn't going as smoothly for you. A lot of women start to feel better in the 2nd trimester, and you are almost there! I hope that you will feel better soon. The blood volume boost can be really helpful. You mentioned that you tried 2.5 mg of midodrine. I wonder if a higher dose would be beneficial for you. It might be worth talking to your doctor about. I took 15 mg of midodrine during my last pregnancy, and it really helped me. You might find compression hose to be beneficial also. I wore compression through all 9 months of pregnancy, and it was very helpful for me. Hoping for a miracle along with you, Rachel
  6. I forgot to mention that I did take medications during my last pregnancy. I took midodrine, doxylamine succinate, and omeprazole, plus all of my normal vitamins and supplements. All of this was under the supervision of my OBGYN.
  7. Hi Gemma, Congratulations! I'm so happy for you. I hope that everything goes well for you with labor, delivery, and motherhood. I have had two full-term pregnancies, and everything went very well. I didn't have any complications with POTS even though I'm fairly disabled from dysautonomia. First pregnancy and delivery: I didn't take any medications during this pregnancy. I did wear compression hose during pregnancy, plus drank lots of water. My son was born in a hospital with a midwife attending the birth. I hadn't planned on having a midwife, but she worked at the OBGYNs office, and I liked her so much that I kept going to her. There was a high risk OB at the practice, but they didn't see a need for me to go to her. The midwife was comfortable having me as a patient, especially since the OBs were on call should there be a complication or need for a c-section. I wanted to go through labor as naturally as possible because I didn't know how my body would react to pain meds or an epidural. I did end up needing an epidural toward the end, and I didn't have any problems or complications with that. I had gone into labor just before midnight (and had never fallen asleep that night at all). As the day went on I became so sleepy and fatigued. By 5:00 in the afternoon I was REALLY in need of rest and sleep. At that point I chose to have epidural so that the pain would go away and I would be able to sleep. Once the pain went away, I slept for half an hour. It was a much needed nap! Soon after that it was time to deliver. Delivery went smoothly. There weren't any complications for the baby or for me. Second pregnancy and delivery: This time around I went to an OBGYN. I would have gone to the midwife who had delivered my son, but she was in Alaska, and I was living in Kentucky. So I went to an OBGYNs office that was recommended by friends. They did refer me to a high risk OB for a consultation, but the high risk OB didn't have any reason for concern, and she said I could return to the regular OBGYN office. The second time around I planned to be induced in the late morning. I didn't want another experience of 48 hours with almost no sleep. My health deteriorates quickly without sufficient sleep. I also planned on getting an epidural once I got too tired and was in need of pain relief so that I could take a nap. But all of those plans changed two days before my scheduled induction. An ultrasound showed that my daughter was really big, and we decided it was too risky to try inducing and delivering naturally. I had a c-section instead. I had an epidural for the c-section, and that went well. Delivery went well, and my daughter was big, but healthy. There are pros and cons for both. If I had to do it again, I'm not even sure which one I would choose! It was more fun doing a natural delivery. Recovery was also quicker and less painful. But I was so absolutely worn out after the marathon of labor, and 36 hours without sleep was especially difficult. The c-section was quick and didn't result in any sleep loss. There was very little pain involved with the c-section during prep and delivery. But the c-section is a more painful recovery. Even now, 5 years later, there is still a spot on my abdomen that is extra tender. I hope this helps, and I hope that everything goes well for you. Rachel
  8. It has been a wonderful 7 years! Thank you, DINET community, for all you have done for me! It has been a pleasure volunteering here. I will now be devoting much more time to rest. I will miss all of you and will be sure to check in now and then! Meanwhile, you can find mere here on facebook: https://www.facebook.com/CranberryTeaTime

  9. Hi Midatlantic, I'm glad the video was helpful for you. I hope it is helpful for your doctors too! You mentioned that you wish you lived near Dr. Svetlana Blitshteyn. In case you weren't aware, she does offer phone consultations. I'm not sure if this would work with your insurance or not, but I wanted to let you know in case it would be of benefit to you. I hope that you will be able to find the help and treatment that you need! Rachel
  10. "Therefore we do not lose heart, though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 2 Corinthians 4:16-17

  11. It looks great! Thank you, Carrie! And thank you to everyone who contributed to this newsletter. I'm sad to be leaving DINET, but thrilled that DINET is in capable hands and has many wonderful volunteers. It will be exciting to see DINET continue to grow in the coming years.
  12. Hi Lisa, Good to hear from you! Being on amitriptyline will probably make your serum serotonin levels higher, but it still might be a helpful test to have. Your doctor might know if your serum serotonin levels are appropriate given your medication dose. My serotonin level is going to be retested in about a month. We're expecting the level to be slightly higher, but if it is a LOT higher, then the doctor will know that something else is going on with my serotonin level. I am currently taking 30 mg of amitriptyline. When I took it a few years ago my doctor wanted me to slowly go up to 50 mg. But when I got to 40mg I started getting pain behind my eyes. Amitriptyline can cause increased ocular pressure, and I think that is what happened to me. So I went back down to 30mg, the pain went away, and then I went to an eye doctor to make sure I didn't have too much pressure in my eyes. Everything looked good, so I've stayed at 30mg as my dose. Rachel .
  13. Hi Naomi, I haven't had any trouble with amitriptyline and my heart. I don't have nearly as much trouble with my heart rate now as I used to, though. I rarely have Inappropriate Sinus Tachycardia anymore. On rare occasions I get PACs and PVCs. Amitriptyline hasn't made any of that worse. I know of other potsies who take amitriptyline. But just because it is safe for us doesn't mean that it is for everyone. If you have concerns, it would be helpful to talk it over with your doctor since he/she will have a better idea of how it may affect you. I hope that you will be able to find something to help alleviate your migraines. Rachel
  14. Hi Sarah, I had thought that my serotonin level would be low because I was having a terrible time sleeping this fall. I could only sleep about 5 or 6 hours total many nights. Sometimes I'd wake up two or three times in the night, and it would take me an hour or two to get back to sleep. So I was quite surprised to see that I had high serotonin levels. Even with the high serotonin and taking my regular dose of melatonin each night, I struggled to sleep. Now I'm sleeping really well, though. I'm getting about 10 hours of sleep each night, and that helps so much. I don't think I have had my dopamine levels checked. I haven't tried Maxalt. The only migraine meds I've tried, besides the ones I am taking currently, are Topamax and Fioricet. Neither one provided any migraine relief for me, though. Rachel
  15. Wouldn't you know, after posting this I had migraines three days in a row! Frova and extra rest have been helping. Sarah, that's interesting. I'm glad you don't have carcinoid, but I'm sorry they haven't been able to find a cause for your high serotonin levels. From what I understand, serum serotonin levels aren't often checked. I wonder how often serotonin levels are high in the general population or in those with dysautonomia.
  16. My fatigue and muscle weakness continue to progress, and I continue to struggle with migraines. I am scaling back on my already substantially limited activity level. I am seeking to live well with dysautonomia and focusing on being a wife and a mother to the best of my ability. I won't be doing much volunteer work for DINET, but you will still find me online, whether on the DINET facebook page, the forum, or on my blog. You are always welcome to visit me in these places!

    1. Rachel


      I have enjoyed my time serving as DINET president, and I am thankful for the various ways I have been able to volunteer for DINET over the years. It has been challenging, rewarding, and fun. Thank you, DINET, for allowing me this opportunity!

  17. Angelloz, I would be interested to hear what your neurologist has to say about it. If you are comfortable sharing, would you please PM me if he has any insights about your elevated serotonin? Looneymom, I will enjoy being happy! I don't know if my elevated serotonin level actually makes me happier, but it's funny to think about!
  18. Hi Everyone, I wanted to give an update on my migraines. I posted last fall about my struggle with daily migraines (http://forums.dinet.org/index.php?/topic/24440-migraines/). Although I do still struggle with them, I have started a couple of medications that have provided some relief. I am taking amitriptyline again. I had wanted to avoid it for as long as possible because it interferes with my sleep, but when the migraines never would go away, I knew I had to start a preventative med again. The amitriptyline is helping. It doesn't completely take the migraines away, but it lessens them. I still always have a little bit of sensory overload, and if I push myself too hard, then the migraines get worse. Sometimes even with pacing myself I still get migraines. But it's not a bad migraine every day like it used to be. My doctor also started me on a new medication for migraines to use as needed. It is called Frova, and she said it is especially helpful in females who get migraines. I have tried it a few times, and it is very helpful! It prevents the migraine from getting any worse. A big help! Before starting amitriptyline I asked my doctor about checking my serum serotonin level. Looneymom told me that when her son had daily headaches and when they tested his serum serotonin, it was 0! I had never had my serotonin level checked, so I was curious what it might be and if I could have a low level that was causing headaches. My doctor ordered the test, and I had it checked before I ever started amitriptyline. My level was 310. The normal range, according to my lab, is 56-244. I was quite surprised to see it high since my blood work is usually right smack in the middle of the normal range. Does anyone know what might cause a slightly elevated serotonin level? My doctor wasn't sure what to think, but she joked with me that I must be really happy! It isn't high enough to be concerned about something like carcinoid syndrome. We will be checking my serotonin level again next month to make sure it isn't continuing to climb. I was a little nervous about taking the amitriptyline since my serotonin is already elevated, but the doctors think it will be okay. And it does help to lessen my migraines, which is very important right now. If you have any thoughts on elevated serotonin and dysautonomia, I'd like to hear them. Thanks! Rachel
  19. Charlie fixed it for us. It just took a while to diagnose the problem. Thanks for your patience! Everyone should now be able to upload an image that is 100 KB or less. Gravatar is also still an option. Rachel
  20. Hi Everyone, Thanks for your patience. Charlie has fixed the forum image problem for us. You can now upload photos that are 100 KB or less. You can also still use Gravatar if you prefer. Rachel
  21. Hi Kitt. We're still working on fixing the feature that will allow us to upload pictures again. Tech support is looking into it. Meanwhile, Gravatar is working. Anyone who would like to have a picture on the forum can link to their Gravatar. You can go here to sign up for Gravatar: gravatar.com. Once you have a picture uploaded to your Gravatar account, you can go to your forum profile settings to link the Gravatar to DINET. Hope this helps! Rachel
  22. Hi Naomi, For some reason it no longer works to upload a picture. We used to be able to upload pictures that were less than 100 KB. Here is a recent topic discussing the problem: http://forums.dinet.org/index.php?/topic/24793-member-profile-pictures/#entry231424 I will check with Charlie and see if he has found a solution. Rachel
  23. Hmmmm.... you're right, Katherine. I just tried uploading a photo (only 80KB), and it didn't work. I'll check with Charlie about that. I am currently using a Gravatar, and that works without any problems. Rachel
  24. Hello DINET Forum Members, When the forum was transferred to the new site, a lot of profile pictures were lost in the process. I'm so sorry about that! Everything is back in place now. If you would like to have your picture back up, you may go ahead and upload a new one or link to one online. If you need further instructions on how to upload or link to a photo, you will find some helpful information in Sufish's topic here: http://forums.dinet.org/index.php?/topic/5555-helpful-hints-for-forum-participation/. Please let me know if you need any help or have further questions. Thank you, Rachel
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