That's great news, @shaylala and brings hope to others! Hope you will never have to deal with the severe hypnics again.
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@timpowell84 I am sorry your headaches are also excruciating and have been difficult to diagnose and treat. Has any neuro mentioned that it could be a subtype of Ice Pick Headache? Have you even been prescribed for preventative use, an inflammatory drug such as indomethacin (Indocin)? It can sometimes a prevent nocturnal inflammatory headaches. It is discouraged for long-term use to high risk of gastric ulceration, but using proton pump inhibitors simultaneously can help prevent ulcers. Nothing helped my hypnic headaches prior to diagnosis–including multiple narcotics, sedatives/hypnotics, migraine meds, etc. They did not even touch the pain. Preventative use of nightly Indocin (plus lamotrigine, coffee, and proton pump inhibitor) two hours prior to bedtime, helps prevent the severe hypnic from occurring maybe 95% of the time. I hope you can get some help–it is very depressing and difficult to navigate. Here is a link that discusses Ice Pick headaches (which can feel like stabbing of the eye) and how they are treated. https://www.healthline.com/health/headache/ice-pick-headaches#treatment
Thank you so much, Lisa, for the link and for isolating some particular helpful tips. I will prioritize my questions and follow these tips in planning my visit. Yes, there are many patterns that I have associated with the hypnic (and cluster) headaches over the past 14 years. For the recent hypnic headache at the BNB, it occurred after a change in time zone (3 zones) and after a string of 14 days of migraines (which HAD responded daily to oral Frova plus motrin and ondansetron), sometimes multiple daily doses). For some reason, the preventative indomethacin and Lamotrigine fail in some circumstances, including traveling across time zones. Over the years, I have tried various additional preventative methods prior to travel to try to minimize the time zone impact (with my MD/neuro approval). I hope that discussions with the specialist with Mayo will help. My travels are not for vacation, they are for parental care. Otherwise, I would avoid travel! Thanks again for the link, and suggestions–I appreciate it!
Updating my situation, and hoping that others can possibly update their experiences and headache status. I'm trying to tag @cherylsd @kdubos @lauriedr @teege1 @lisafl @dawn_giacabazi @jals @gothope @lulu1962 @socal @meme59 @lwatson612 @quazar @jana15 @shalayla @so4tune8 @patiencepie @timpowell84 @lisalucier @colleenyoung and JK @contentandwell. In my early sixties, I continue to have migraines, hypnic headaches, cluster headache; and one of the neuros in our "system" believes that my hypnic headaches (despite preventative treatment) then trigger a migraine and/or cluster headaches. I still have ER visits 1-2 times per year when preventative, acute and rescue meds fail.
I was shocked to read 1-2 months ago that migraines have recently been shown (reputable research) to not only increase stroke risk, but also increase the risk of dementia (not including vascular dementia). Stoke and dementia both run in my family, and it was sobering to learn about the link to dementia. I read years ago that poorly controlled migraines may possibly lead to brain lesions.
About a month ago I stayed at a BNB for the first time, 3000 miles from my home; unfortunately, on day 3 I awakened with a hypnic headache and was severely ill for hours, and after calling my health provider back home, was told to get to the ER. Both the Ambulance techs started IV fluids en route to the hospital; and the ER MD on duty the ER doctor insisted on brain scans since my usual very low BP was so high it was frightening. One of the two ambulance techs was new and shouted out that he had never seen a BP that high, which also made me realize I was in trouble. Upon return to my hometown, I contacted Mayo and I am so greatful to report that they accepted me as a patient (my appointment is in January). I am paying out of pocket because my health provider, whom I shared my plans with last week, says they don't do referrals out of the "system." Thirteen years ago I went through the same battle, and became a self–pay patient of a headache specialist several hours distance from my hometown. My current local neuro will also not write an RX for any of the newer migraine preventatives, even for me to fill self-pay at a non-provider pharmacy. These meds are not on our providers formulary and according to him, "there is not enough post-marketing experience" to prove they they are effective and safe.
Well, none of this makes me angry, it just makes me sad because my husband IS angry that I have not sought an appointment to visit Mayo sooner. I am hoping at Mayo to learn more about medical and non-medical treatments, recent "theory" regarding potential causes, how to manage with pain and the ill effects of "post hypnic headache" dehydration, nausea, and electrolyte imbalance. I am also hoping to find out eventually if there is any evidence (labs, exams, scans) that suggest I have early onset dementia, evidence of prior mild stroke, and kidney or endocrine issues; and how I can prevent or stall the progression of any of these diagnoses. I will be happy to share after my visit, anything that I learn that might help others @gothope @timpowell84 @lisalucier and Colleen Young. In my early sixties, I continue to have migraines, hypnic headaches, cluster headache; and one of the neuros in our "system" believes that my hypnic headaches (despite preventative treatment) then trigger a migraine and/or cluster headaches. I still have ER visits 1-2 times per year when preventative, acute and rescue meds fail.
@brie87144 your experiences and condition are so very sad to hear about. First, I have to say, with your parental/family/work obligations, it is truly astounding that you have been able to hold it together despite feeling so awful, so long, with no clear diagnosis nor obvious path to recovery. I pray that you WILL find the help you need, and recommendations for next steps, and recovery. I noticed in your list of specialists consulted there was no mention of a TOP infectious disease specialist. Because your first symptoms began after a viral infection, I wonder if you might have 1) a RARE viral infection from the start, OR 2) a secondary infection set in after the first “infection,” causing the ensuing “pins” sensations, balance issues, bladder issues, and sensory and balance/stamina malfunctions.
If you could possibly have Lyme disease–or any infectious disease that is even more rare–maybe a TOP infectious disease specialist could help rule in or out causes, and recommend treatments. There are many many rare infections that can throw our systems into disarray. Here is a list of “rare” viral infections (seventeen pages of various types, with short descriptions, & links) https://rarediseases.info.nih.gov/search?Keyword=rare%20viral&page=1 This list might not be exhaustive. The same site provides a 72 page list of “rare bacterial” bacterial infections, short descriptions, and links to more info. https://rarediseases.info.nih.gov/search?Keyword=rare%20bacterial%20infections&page=1 Again, this list might not be exhaustive, but maybe you could copy/carry it to a consult with a TOP infectious disease specialist, to determine if ANY might be responsible for your symptoms, and if there might be a treatment that could help with a cure or at least improvement of your symptoms and quality of life.
I, too, am so sorry you are going through this, not only for the frustration, pain, sensory loss, risky balance/stamina and uncertainties you are experiencing, but also for your family who also probably feel helpless as to what to suggest. I will keep you in my prayers, and hope that helpful resolution is within reach. Please keep us posted.
Hi @confused77 I am sorry that your daughter (and you) are going through this, and glad that you are reaching out to find solutions. I would also recommend what @sharonvogel recommended, to keep a diary and take it to a reputable OBGYN or Endocrinologist. Not pleasant, but please also consider taking a photo of the “findings” reported by your daughter (in toilet bowl, and on tampon) so that your medical team can “see” exactly what she’s talking about. If she does have PCOS and your OBGYN has not offered suggestions on lifestyle methods of treatment and/or meds, you might consider seeing an Endocrinologist (ask reservation staff if they are experienced in treating PCOS–some specialize in diabetes or other conditions).
I was diagnosed with PCOS while in college as a results of being referred to an Endo by the Infirmary nurse; I had symptoms since I was 11 years old. It can be manageable for many, depending upon the hormonal status and causes. Endo suggested that I lose weight, suggesting that my excess “body hair” would likely fall out, acne would clear up, and “periods” would be more normal and tolerable. It was TRUE! I have been able to keep my symptoms in check (except for hormonal migraines) for many decades by eating a high fiber diet (watching calories) and getting plenty of aerobic exercise (which also is a mood enhancer). I also have thyroid disorders (autoimmune hashimotos thyroiditis with hypothyroidism) which were not diagnosed for many decades. In both cases (PCOS, and hashimotos thyroiditis), endocrinologists helped me the most. Not that the others did not care, just that these issues are a small percent of what they encounter clinically versus the Endocrinologists. I hope you and your daughter can find help and that she will feel better soon.
FANTASTIC! It is so wonderful that you found a physician who did a comprehensive set of tests, and exams. Glory Hallelujah! The results are not surprising, and I hope you are reassured to know your diagnosis now, and that effective treat is available. I hope your symptoms will start clearing up as you begin thyroid medications, and hope your appointment with the ENDO can be expedited. The day after I began taking levothyroxine (Synthroid) I finally experienced relief from a daily headache, occurring for three years! In a few weeks after beginning Synthroid, my skin normalized, energy returned, fluid accumulation (and carpal tunnel syndrome) remitted, and hair/nails improved. I pray that you will feel SO much better soon. Thank you for sharing your experience, @plshelpmyfatigue You are on your way to recovery!!! Happy Holidays!