Pixie-elf Posted September 30, 2011 Share Posted September 30, 2011 I finally got SOMEONE to check my hormones. No one would freakin' do it until I was sent to an endocrinologist because they figured it was unlikely I had too low testosterone. (And with medicaid, if your doctors don't want to check you for something, you are fecked.) So, endocrine decides to re-run the test. It comes back with my testosterone as 44 which they said was a tiny bit on the high side. I was put on Spironolactone (which I've been on before) so we'll see what this does. I'll report back if it helps any. Last bust helped things immensely. I'm still having some mild hits, but they're pretty low. Mystina Quote Link to comment Share on other sites More sharing options...
alleyoop Posted September 30, 2011 Share Posted September 30, 2011 http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1228226896/0 Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted October 5, 2011 Author Share Posted October 5, 2011 Updating this because I believe it pertains to busting. The Spironolactone, since I started it, has had me in a fog, with pretty constant shadows and mild hits. I'm fecking miserable. So I'm going to try stopping it or tapering it and see if it reverses the constant pain and shadows. The reason I think it pertains to busting is : What if the busting had increased my testosterone to 'fix' an imbalance? If the Spironolactone is lowering that, it might explain why I feel so badly. Recording this here, because again, I'm awful damned foggy. Focusing on anything is hard as hell... Mystina Quote Link to comment Share on other sites More sharing options...
Stump BeefKnob Posted October 8, 2011 Share Posted October 8, 2011 I got my testosterone checked about a month ago and I was at the high end of the spectrum (around 670 I believe). That came as no surprise since I am such a stud and I ooze manliness from every pore. I have no idea where I am going with this Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted October 8, 2011 Author Share Posted October 8, 2011 I got my testosterone checked about a month ago and I was at the high end of the spectrum (around 670 I believe). That came as no surprise since I am such a stud and I ooze manliness from every pore. I have no idea where I am going with this I have no idea either, but it sure did make me laugh! Quote Link to comment Share on other sites More sharing options...
Stump BeefKnob Posted October 8, 2011 Share Posted October 8, 2011 The moral of the story: Even complete studs are no match for CH Quote Link to comment Share on other sites More sharing options...
Bonkers Posted October 8, 2011 Share Posted October 8, 2011 I think mine level's closer to 67. Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted October 8, 2011 Author Share Posted October 8, 2011 I think mine level's closer to 67. Pfft, you got PLENTY of testosterone. I'm sure of it. You're manly enough for 10 people! Plus, you're SUPERDAD. Though they do say once men become Fathers, their testosterone levels get lower... I saw a couple of articles saying that recently. Mystina Quote Link to comment Share on other sites More sharing options...
TiredOdis Posted October 15, 2011 Share Posted October 15, 2011 I got my testosterone checked about a month ago and I was at the high end of the spectrum (around 670 I believe). That came as no surprise since I am such a stud and I ooze manliness from every pore. I have no idea where I am going with this Well golly! Now I guess I should worry. Just talked to the nurse at my Doc'c today and they want more tests cause mines over 1400. I'm an animal hunh? Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted November 14, 2011 Author Share Posted November 14, 2011 I wanted to update this. I'd been on the Spironolactone for over a month... Friday I saw neurology and found out I gained 10 FREAKING POUNDS. Nothing has changed in the past month other than this medication, and I've felt like crap since I've been on it! I see endocrine on Wednesday, but my head is throbbing, and I think this crap has something to do with it. Did some research, other women have had the same result. I didn't factor in once I got to Chicago that "Hey...Maybe the Spironolactone is what's got me going back into high cycle a bit early...." I was thinking earlier "Maybe I should dose" then I realized "Wait, what if...." I'll update over the next few days how things go. If Endocrine can put me on something else to lower the testosterone, fine, if not, I'll take the high testosterone and less headaches, thank you very much! Quote Link to comment Share on other sites More sharing options...
tingeling Posted November 14, 2011 Share Posted November 14, 2011 What is the problem if there is a problem with having a little bit high testo levels? Quote Link to comment Share on other sites More sharing options...
tingeling Posted November 14, 2011 Share Posted November 14, 2011 i mean like it is dangerous or anything? Quote Link to comment Share on other sites More sharing options...
alleyoop Posted November 14, 2011 Share Posted November 14, 2011 [highlight]Hormonal manipulation of the hypothalamus may also be a possible treatment strategy for cluster headache. Clomiphene citrate is an ovulatory stimulant, which actively alters hypothalamic estrogen receptors. The author has already shown the partial effect of clomiphene citrate in SUNCT syndrome. 6 Atreatment refractory chronic cluster headache patient is presented who had a dramatic and sustained response to clomiphene citrate treatment. Prior to starting the clomiphene citrate, hormone laboratory testing was completed and showed normal total testosterone levels (464 ng/mL; normal range 241-827 ng/mL), low normal free testosterone levels (9.2 pg/mL;normal for ages 30-39 years; 8.7-25.1 pg/mL), low normal luteinizing hormone (LH) levels (1.8 mIU/mL; normal 1.418.1 mIU/mL), normal prolactin, and follicle stimulating hormone (FSH) levels. Clomiphene citrate was started at 50 mg/day and the patientÂ’s headaches decreased from daily to one headache 3-5 days per week.[/highlight] See attachment. Clomiphene_in_CCH.pdf Quote Link to comment Share on other sites More sharing options...
tingeling Posted November 14, 2011 Share Posted November 14, 2011 Thank you. I will bring this to my doc. Quote Link to comment Share on other sites More sharing options...
Ricardo Posted November 14, 2011 Share Posted November 14, 2011 If there's anything good that can be pulled out of all this, It might include the question to your doctor-"have you ever heard of abnormal testosterone levels in people with Hemicrania Continua?" After he tells you no (or more likely "I have no idea" and you can tell him to get back to work and start researching ) You can ask him, "how about with clusters?" -Ricardo Quote Link to comment Share on other sites More sharing options...
tingeling Posted November 14, 2011 Share Posted November 14, 2011 Yeah i tried and he answered there is no visible indication what so ever that i have to high testo levels. That is why i can`t get it checked and i would very much like to show him this info The good thing with him is that when he get the info he takes it seriously. Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted November 14, 2011 Author Share Posted November 14, 2011 Ting: It seems in most cluster-sufferers, it's LOW testosterone levels... I don't know if there are any signs for that in women really. That's what you want to be checked for! If there's anything good that can be pulled out of all this, It might include the question to your doctor-"have you ever heard of abnormal testosterone levels in people with Hemicrania Continua?" After he tells you no (or more likely "I have no idea" and you can tell him to get back to work and start researching ) You can ask him, "how about with clusters?" -Ricardo Oh no, the neurologist heard about this, and figured my hormonal problem played a part in some of my headaches. He even stated it might be some strange combination of several of my conditions. I have a hard time believing this. All signs point to clusters... All other tests have proven normal. And I have a hard time wanting to prove anything to a doctor who doesn't believe in Chronic Cluster Headaches. I'm kinda happy I don't have to see him for 4 months to be honest. Quote Link to comment Share on other sites More sharing options...
tingeling Posted November 15, 2011 Share Posted November 15, 2011 How can anyone NOT believe in chronic CH? Aren\t you like a living proof? Quote Link to comment Share on other sites More sharing options...
Brad Posted November 15, 2011 Share Posted November 15, 2011 It seems that many physicians are so full of their own ego they don't want to here a patient suggest that they have a bit of knowledge on their condition then. They tend to become a legend in their own mind, which is actually causing more harm then good. The statistics on diagnoses and medicals errors are staggering. They need to get over themselves and open their ears and minds. But that's just my opinion. > :-[ Quote Link to comment Share on other sites More sharing options...
Brad Posted November 15, 2011 Share Posted November 15, 2011 Sorry about the few typos. I just woke up and I feel for ya Pixie-Elf. They sometimes chap my a#s! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted November 15, 2011 Share Posted November 15, 2011 ...It seems that many physicians are so full of their own ego.....They tend to become a legend in their own mind, which is actually causing more harm then good. Yep, the deadly combo of ignorance and arrogance unfortunately appears to pervade that profession. > It's nice to be able to vent with some online doctor bashing - I know, I've had years of experience! Quote Link to comment Share on other sites More sharing options...
alleyoop Posted November 15, 2011 Share Posted November 15, 2011 It's nice to be able to vent with some online doctor bashing I know, but how productive is it? Let's try to stay on topic here. Bob Quote Link to comment Share on other sites More sharing options...
Pixie-elf Posted November 15, 2011 Author Share Posted November 15, 2011 Back on topic: I think I'm already feeling better after 2 days of not taking the Spironolactone. It's going to take at least a month for the stuff to fully get out of my system, and it might just be the fact my head cold is better... But I feel less fatigued. Quote Link to comment Share on other sites More sharing options...
Brad Posted November 16, 2011 Share Posted November 16, 2011 I apologize. I have had many doctors give me lots of unnecessary meds for most of my life and it just strikes a nerve, with me. I'm even pursuing my doctorate and I refuse to behave in that manner with my clients. I am seeking to specializing in integrative medicine and I will build a rapport with my clients with open ears and understanding. Back on topic, as well, I am interested on having my testo levels checked. In your article Alleyoop,do males actually posses FSH and estrogen levels? I haven't covered that in school, yet. Quote Link to comment Share on other sites More sharing options...
alleyoop Posted November 16, 2011 Share Posted November 16, 2011 I apologize. I have had many doctors give me lots of unnecessary meds for most of my life and it just strikes a nerve, with me. I'm even pursuing my doctorate and I refuse to behave in that manner with my clients. I am seeking to specializing in integrative medicine and I will build a rapport with my clients with open ears and understanding. Back on topic, as well, I am interested on having my testo levels checked. In your article Alleyoop,do males actually posses FSH and estrogen levels? I haven't covered that in school, yet.  No problem Brad, I completely understand as does, I'm sure, Agent Orange - our poster child for medical negligence. I am not nearly as qualified as you to talk about FSH, estrogen or LH levels. All I can tell you is that my neuro showed me this article and prescribed clomiphene citrate to me. It took me six months and talking to several different people including another neuro, to finally make up my mind to fill the script. That has been over three years ago. Clomiphene citrate has not stopped my headaches, but it has made me go from chronic to episodic, with a reduction in frequency and intensity of CH. I am not recommending this drug to anyone. There are just too many unknowns. I do get my T-levels checked semi-annually along with a PSA. So far, so good. But this is uncharted territory, and I have no doubts but that I am a guinea pig. I hope this helps. Quote Link to comment Share on other sites More sharing options...
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