Ling Posted March 16, 2005 Report Share Posted March 16, 2005 Hi AllI am busy with my second last reduction of heart medication. Next Saturday I will be off all my chronic medication and trying hard to fall pregnant. I feel terrible. I am exhausted and battling to concentrate. I just want to sleep and sleep. It is affect my work. Is there anything I can do? Thinking about my bed all day long. I wonder if I have made the right decision?Last night I felt so bad, it felt as if I was dying. All energy had been sucked out of my body and I was left with this ton of flesh to live inHELP! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 16, 2005 Report Share Posted March 16, 2005 LingI also have trouble sleeping sometimes--I think this in another common symptom for us. What works best for me is trying to keep a regular schedule of bedtime, trying to do some kind of exercise during the day (yoga is great for energizing and relaxing the body). Taking a COOL shower before bed also seems sometimes to induce sleep for me. Sometimes I find the more I worry about it, the more worked up I become and it becomes an even worse problem. When you find yourself worrying about it, just know that sleep WILL come again.Here are some other past discussions on this topic that you may find helpful and comforting:http://dinet.ipbhost.com/index.php?act=ST&f=1&t=1413http://dinet.ipbhost.com/index.php?act=ST&f=1&t=841It sounds like you are also worried about some other things--like your decision to attempt to go off all of your meds and try to get pregnant. It is a huge step to decide to start a family even if a person is well. Try not to worry about what-ifs. Even if your pregnancy is hard b/c of POTS, you will be under appropriate care and you and your child are very likely to be fine. I think you are a strong and brave person!Also, keep trying to talk to your doctor about meds that you may be able to take during pregnancy, especially after the first trimester. I realize you said that your doctors are opposed to any medications during pregnancy, but many women in the U.S. with POTS have used medications during their pregnancies that are considered safe. It might be better to have this discussion now rather than later, and it might give you some more peace of mind, if they can agree to the use of certain medications.One more thing. This book helped me to get pregnant very fast--so I thought you might find it helpful too. I thought I knew everything I needed to about fertility, until I read this book. I used the special thermometer (which I think you should be able to buy in any drug store in South Africa) and followed the charting instructions. It was an easy process!Taking Charge of Your Fertility: The Definitive Guide to Natural Birth Control, Pregnancy Achievement, and Reproductive Health (Revised Edition)by Toni Weschler Best wishes Ling!Katherine Quote Link to comment Share on other sites More sharing options...
Gena Posted March 16, 2005 Report Share Posted March 16, 2005 Ling,It sounds like your body is having a hard time coming off the meds. I'm so sorry to hear this. How has your heart rate and blood pressure been lately? They might be too low?You may want to talk to your doctor about this incredible fatigue you're feeling and you may want to ask him/her about adding a b-complex vitamin to your regimen for additional energy. Sometimes I drink caffienated green tea in the mornings or afternoons if I need a little extra pep or eat a protein bar if I can't tolerate the caffeine.Are you drinking enough fluids, salt and electrolytes? Take a look at your diet and make sure your're getting a good balance of protein and complex carbs in addition to your fruits and veggies.Like Katherine suggested, there are energizing forms of yoga. The breathing and gentle movements can really help oxygenate the blood and get it flowing. You're body is adjusting and hopefully it will rebalance itself soon. Don't give up hope! Gena Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted March 16, 2005 Report Share Posted March 16, 2005 I guess it was too early in the AM or something when I read your post, Ling! I see you are saying you are TIRED and not that you can't sleep! (I am actually sleep-deprved right now due to being mom to a 2-yr old who doesn't like to go to bed and having some trouble sleeping myself!)Gena's suggestions are great.Anyway, hope the book recommendation I gave you is helpful at least.Katherine Quote Link to comment Share on other sites More sharing options...
Christine Posted March 16, 2005 Report Share Posted March 16, 2005 I guess it was too early in the AM or something when I read your post, Ling!  I see you are saying you are TIRED and not that you can't sleep! (I am actually sleep-deprved right now due to being mom to a 2-yr old who doesn't like to go to bed and having some trouble sleeping myself!)Gena's suggestions are great.Anyway, hope the book recommendation I gave you is helpful at least.Katherine<{POST_SNAPBACK}>Linq,I am in the same boat as you. I have recently gone off of my medication to try and get pregnant. I didn't realize how much my medication helped me. Now that I am off my medication I had to change my lifestyle even more. I made sure I get enough and consistant sleep. I am trying to eat better and ofcourse I keep hydrated. I am more aware of my body now since being off of my meds. I can tell when I am going to have a bad spell. I also wear support stockings that help a lot. I stopped trying to do everything, basically I treat my body very carefully. This has helped but I know it won't fix everything. When I was going off of my medication, my body was in shock and I too have experienced being tired and just wanting to sleep. I know this might sound weird but I do believe in mind over body. I keep telling myself that I know this is hard on me but I really want a baby and if this is what it is going to take then I have no choice. Also, once you are pregnant you can always go back on a low dose of medication if your health is at risk. I do understand and I hope you start feeling better soon. There are somedays that I am ready to give up and go back on my medication but I feel as if I have to give this a chance. My blood pressure drops and my heart rate has increased again but like I said earlier, I don't put any extra pressure on my body. I let my husband do all of the lifting and he is helping more around the house. Before, we decided to get pregnant we sat down and talked about how he will have to help me more. I have a wonderful husband who is really caring. He doesn't like to talk about my POTS but he has been a blessing. Best of luck and if you need to chat you can email me. (jcwagenlander@aol.com) Christine Quote Link to comment Share on other sites More sharing options...
Ling Posted March 17, 2005 Author Report Share Posted March 17, 2005 Thank you all so much for the advice. My heart is very busy lately and my blood pressure and sugar levels are very low. I appreciate all your advice and will try to apply all of it. Thank you Christine for your support I will be e-mailing you directly for advice.THANK YOU ALL! Quote Link to comment Share on other sites More sharing options...
Christine Posted March 17, 2005 Report Share Posted March 17, 2005 Thank you all so much for the advice. My heart is very busy lately and my blood pressure and sugar levels are very low. I appreciate all your advice and will try to apply all of it. Thank you Christine for your support I will be e-mailing you directly for advice.THANK YOU ALL! <{POST_SNAPBACK}>Linq,No problem, I really understand and I hope you feel better soon!Take care,Christine Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 17, 2005 Report Share Posted March 17, 2005 For me sleep can only be guaranteed with an early rise. If i sleep in - and since pots started i ALWAYS feel like just sleeping forever - i feel wired that night and cant sleep - get weird pressure feelings in my head that wake me up.Or i get a migraine and my heart pounds all night which makes it hard as well. Quote Link to comment Share on other sites More sharing options...
calypso Posted March 18, 2005 Report Share Posted March 18, 2005 Ling,That seems kind of odd that you're tired ... if you went off of a beta-blocker, it seems that you should be more wound-up than tired. That's how I felt when I stopped mine. But what you feel is what you feel, so I'd try cutting down on carbs (which cause blood sugar surges that lead to fatigue), eating small, frequent meals, drinking cool beverages (can you have any caffeine, like iced green tea?), and getting fresh air. I don't know how cold it is there right now, but even 15 minutes outside will wake you up. If the sun's out, even better.Good luck. We have to go through some rough times to have a child, but it's all worth it.Amy Quote Link to comment Share on other sites More sharing options...
Lance Posted March 22, 2005 Report Share Posted March 22, 2005 Gena, This is my first time on the site, so I am not sure of what I am doing. I thought your post was interesting, but I have a question in regard to electrolytes, etc., and gastric discomfort. I was diagnosed with Dysautomia in 92 at a clinic for Dysautomia. I had to have stomach surgery to reduce the outrageous amount of stomach acid that my system produces as one of my symptoms of Dysautonomia. Obviously, Gatorade and the like give me trouble, but I need to do something to help with POTS. Anyone else have a similar situation?Lance Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted March 22, 2005 Report Share Posted March 22, 2005 Cerefolin has helped my husband with fatigue and brain fog - it is a prescription nutritional supplement containing vitamins B2, B6, B12 and some sort of special Folic Acid that is more readily absorbed. We tried it over one of the other prescriptions for fatigue because it is vitamin based. www.cerefolin.com Quote Link to comment Share on other sites More sharing options...
opus88 Posted March 22, 2005 Report Share Posted March 22, 2005 Ling,Something to try that I think could be of great help to you with your blood sugar difficulty. For the next week, eat ONLY the following:-- meat of all kinds, fish (fatty is better, such as salmon, mackerel, etc.), dark meat of poultry, eggs, cheese-- lightly steamed GREEN veggies such as green beans, asparagus or spinach - but NOT peas or lima beans-- real butter or extra virgin olive oil or virgin coconut oil-- avocados, black olives-- almonds, pecans and cashews (whole or as a nut butters)-- purified water-- very small amounts of oatmeal or 1 slice of whole grain bread per day-- Celtic or Himalayan sea salt instead of regular table saltYou can have as much of these foods (except the oatmeal or bread) as you wish, as many times as you wish. After one week, you may feel so much better that you will never want to eat anything else.I went from years of having to eat every 90 minutes (to keep my blood sugar up) to eating only 3 meals a day - and that shift happened within a 24-hour period. It was absolutely amazing! I now feel sooooo much better in terms of fatigue, motivation, thinking, adrenaline rushes and more! Quote Link to comment Share on other sites More sharing options...
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