Rachel55 Posted June 5, 2019 Share Posted June 5, 2019 Wondering if anyone else has experienced this...... For the THIRD time in the last 2.5 years, I am experiencing major, major hair loss. My dermatologist thinks it is chronic Telogen Effluvium and has asked about "triggers" 3 months prior to each episode of rapid hair loss. The first time, I think the trigger was a severe disc herniation in my lower back. However, I also remember getting therapeutic botox for cluster headache around that time. The 2nd event happened three months after a cluster attack and botox. This most current hair loss episode is also three months after a cluster attack and botox. I just can't figure out if the "trigger" is the actual cluster attack itself, the sumatriptan injections I use to abort clusters, the whack of muscle-relaxants and anti-inflammatories and pain meds that I take to help with the muscle pain (things like robaxacet, naproxen, baclofen, oxys, etc etc - which actually don't help one single bit), or the botox injections, or all of the above? Has anyone else experienced major hair loss episodes? The research that I've done has suggested that chronic Telogen Effluvium may now go in growth and loss cycles for the next 7-8 years! Honestly, it is devastating. DEVASTATING. The hair loss is diffuse but very prominent at the bitemporal areas. It is not hormone related and I know this because of my blood work and also the pattern - androgen alopecia has a slow, gradual onset and a different pattern of thinning on the head. ANYONE??? Rachel Quote Link to comment Share on other sites More sharing options...
spiny Posted June 5, 2019 Share Posted June 5, 2019 Yes and it sucks. It was not caused by my CH though, but by malnutrition for many months. Which was caused by Gluten and a 1/2 dead gall bladder. At any rate, I had terrible digestion problems and constant diarrhea. So, loss of nutrients and loss of hair. So, do you stress (of course you do) and lose weight when in cycle? If so, then malnutrition could be a cause by itself. Biotin supplements help some, along with really good for your hair shampoo/conditioner. My major hair loss was on the sides too. I attributed it to sleeping on my side all night. Lost about 40-50% of it all. Quote Link to comment Share on other sites More sharing options...
Rachel55 Posted June 11, 2019 Author Share Posted June 11, 2019 I have developed Chronic Telogen Effluvium and have lost more than 50% of my hair now (for the third time). I suspect that cluster headache episodes and the meds are the trigger. However, the research says that chronic telogen effluvium now cycles on for 7-10 years. Talk about adding insult to injury. I'm at the end of my rope. Cluster headaches. Massive hair loss. Kidney stones that need to be removed this summer - for the third time! Frozen shoulder (which takes up to three years to resolve). Sleep disorder. Mental health issues (pulling away from relationships and isolating). Etc. etc. I know I'm not a "victim" but F*** I can't catch a break! Send help.... Quote Link to comment Share on other sites More sharing options...
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