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Everything posted by Jeler

  1. Just got my results back on D3 Serum--my level was at 127. Normal range is 30-100. No wonder my attacks aren't with me anymore.
  2. I recently called my Neurologist and they informed me to contact my regular Dr. for a blood test. Well I called my family doc and they told me since I had not seen them since last September that I would have to schedule an office appt. first. Well that's Bull because my last appt. with him was 2 months ago (who's keeping records in this office?). I did inform both offices of the loading I was doing with Vit. D3 too. Not wanting to schedule yet another appointment I went online and discovered this site. https://www.privatemdlabs.com/ Insurance will not cover it but by the time I have an office appt. and an extra cost for blood work I figured it was cheaper in the long run to go with privatemdlabs. Total cost was $56.00 and the blood lab I set my appt. with is only 15 minutes away. Normal cost was $65.99, but found a coupon to save even more $$ ( in fact I always look for online code's/coupon's ) In fact I had my blood drawn this morning and they'll email the results to me in 2-3 days.
  3. Rod Last resort for me as well! I take it as an abortive but does prevent future attacks for the next few hours. For me they do work!
  4. Orally or injection. It is the same drug isn't it? Everyone reacts differently to medication I imagine.
  5. CHF Believe it or not. That's totally up to you. But perhaps I'm not most people.
  6. Jost As usual I perhaps spoke to soon. The beast returned but the duration's for the headaches is much shorter. O2 knocks out of thee park in 10 minutes. Just got over one of the worse episodes I've had for a while. But I think it's because I took 25mg of sumatriptan yesterday to battle my CH's while I ran errands and drove a friend to the airport. Kind of a backlash effect that I've read from other posters here.
  7. Well I'm now on Day 6 of the Vit D Regimen. I began with only 40,000IU of Vit D/day along with 400mg Magnesium, 1200mg. fish oil (still waiting on Multi-vitamin delivery). CH episodes yesterday where confined to only 4 KP-1's compared to for example 10 visits ranging from KP-4 thru 6. Last night was the first evening and early morning hours that I did not have any episodes. What a relief after a 2 1/2 month ordeal. I'm praying for this relief to continue on so I can get back into my normal retirement regime and get back to my pilate classes, which I miss immensely. The reason I began on only 40,000IU of Vit D daily was because I had not had my blood tested previously. I'll make a phone call today and get that scheduled. Have a great day and thank you so much. Jeff
  8. CHfather My present supplier is Jackson Medical. So far so good. Great customer service. I have tried the melatonin at 10mg per night. Didn't notice any decrease in activity at night however. Vast majority of my aborts are down below 15 minutes, providing I catch them in time. However during my night/early morning attacks by thee time I've been woken up with pain it does take a bit longer. O2 definitely has helped. "Looking at your feet?" My eyes are normally closed but I'll take your word for it. Interesting! I do have the ClusterO2Kit, not really impressed with it, but it does the job. I quit using the face mask because of increased pressure against the bridge of my nose which is very painful, so now I just use the mouth piece. Coffee or an energy shot at 3AM for me will not work, I'd be awake the rest of the night. Right now I need some sleep. Thank you Jeff
  9. CHFather Current 02 status is much better now that I've switched my med supplier. Previously was on E-tanks and during bad attacks could empty 1 tank a day. My new supplier is now delivering M60's. Great people to work with and thanks to Rod H here with telling me about this supplier. Great people with personality +, unlike the other supplier. Thanks so much for taking the time to call the Iowa regulatory board, interesting discovery. I did call up AirGas last week and asked them about who they delivered the larger to. Glad to hear your experience with the board was beneficial! 4 days ago I started on the Vit. D regimen, I expect it'll be a few days before I can benefit from it. I'm also going to have my blood tested next week. Lately I've been getting hit semi hard around midnight, 2AM, 4AM and again at 6AM. Using O2 for 15 minutes puts a stop to all of them. Jeff
  10. Starting to think it doesn't matter what number I call for Apria, they all go into customer service (which is handled by people who can not understand how to speak English or understand it) They all told me I need to have a prescription faxed in by my Doctor. They would not or could not understand a damn thing I asked them. Mainly why some branches serve patients with CH and others do not. I am frustrated as hell right now, quite irritable after a miserable night, sorry.
  11. Freud Thank you very, very much! Jeff
  12. Jon019 Thanks, my call into Lincare this morning they said the only tanks they have are E Tanks also. I call the corporate office there also if I don't get anywhere with Apria. Thanks for the very use full information. Have a great evening. Jeff
  13. Freud That's good to know. NuCara gave me 2 E tanks this past Saturday morning. By Monday at 3AM they were empty. Today I went down to exchange them and they told me they were all out so they gave me 3 D Tanks. What a joke I know. Thanks for the info on Apria, I called the local store, that's when they told me they do not service CH patients. ( I damn near blew a gasket) Tomorrow I will give the corporate office a call and explain to them my situation. Thanks for the help and suggestions. Jeff
  14. Thanks again everyone for the help. I've done emgality search here all ready. Just looking for more 1st hand experience. I put the pressure on my 02 supplier this morning! They only supply O2 to 2 other people with CH in my area. (their excuse for not having larger tanks) Moxiegirl, as always it's nice to hear from you. This webpage will help you see the difference's in O2 tanks, better than I can explain it. https://www.tri-medinc.com/page12.htm Hope all is going well! From one Iowan to another. Jeff
  15. Made it thru another weekend here, barely. Finally received my prescription for O2! Yeah, it helped tremendously, when ever I felt a CH arriving at thee door steps, I inhaled the O2 at 15 lpm for 10-15 minutes and the beast was turned away. My one problem now is that the only folks in my area that will fill a prescription for CH only supplies E tanks, well you know how fast you can go thru those tanks. 1 tank/day! Damn. I spent some time this morning calling around to medical suppliers and they either don't have the availability of larger tanks or don't supply O2 to patients with CH . My last hope this morning was Apria, mentioned here on the board. They are the ones that told me since insurance will not pay for O2 for CH patients they will not supply it. They also refuse to take $ from an individual, only accept payments via insurance. What a crock of *hit! My last resort now is to go down to the supplier of the E tanks and see if I can pick up 4 or 6 E Tanks at once. Had to also personally order my 15-25 lpm regulator via Amazon because the supplier did not have one on hand and told me it might be a week before they can get the correct one. My order on Amazon was here on the next day! Yeah! (FYI-my supplier is NuCara) Last Thursday my Doc prescribed Emgality for me as well as the O2. Wondering now if anyone has had any luck with this injectable, it was just approved for use on CH. Before hand it was only prescribed for migraines. Now just waiting to go thru on my insurance. Well that's all for now on my updates. Again, thank you so much for all the help I've received here. I truly appreciate it! Here's to a pain free day to all. Jeff
  16. After reading of the Beer to avoid I found this in our wine cellar! Here's to a pain free evening to all! Jeff
  17. Rod H Thanks for the information. Working at maintaining my Blood Pressure currently and afraid and Energy Drink might be inclined to raise my numbers! Jeff
  18. Funtimes,i Hello and thanks for the info on energy drinks, I'll look into it some more. CHFather Again, thanks for the info on O2. I've copied and texted myself the info when I go visit with the supplier. Jeff
  19. Freud, Thanks for the valuable information! Neuro returned my call this morning and I relayed all this info to them you wrote here. O2 order is moving forward now. They are also moving forward to getting a request in to radiology for a brain/head Scan! Rod, Never heard of it. Sounds like a great place to eat, even though my diet is a bit restricted now to rule out possible food triggers. I'll let you know if I need help with the O2, thanks so much for the offer. I have not tried energy drinks as of yet, truth is they kind of scare me to even try one. I will look into it however. On another side note I did took Melatonin last night, 10mg, to see if it would help me sleep and rid me of CH's waking me up. Beast visited me at 1AM and again at 6 this morning. Felt a bit droggy this morning, but I can handle that. I'm an early riser normally and wake up between 5 & 6 like clock work. Of course I crawl into bed between 9 and 10 each night too. Did feel some relief with 10mg of Melatonin and will try again this evening. 5 hours of sleep is so much better than the 2 hour average I've gotten the last few days. Have a great day and again "Thank you so much for all the Help" Jeff
  20. Moxie ISU is an excellent school for Engineering, Agriculture, Design and Veterinary . My father inlaw is also a grad of ISU in Engineering and ended up with MIT working on the Apollo! Amazing guy! My heart still belongs to U of I however and I cheer on ISU Athletics unless they are playing against the Hawks! Wish I knew where Hickory Park was? Any clues? OK, back to CH! Just got over one of the worst weekends trying to fight the beast off. Wasn't very successful however, last night/early morning I had my Nedi pot attached to my hip, followed by a hot shower before heading into a dark room onto the floor with an ice pack. Midnight to 8 AM is still a blur to me as of what happened and at what time. Geez!! *amn! Called and left a message at Neuro just now and asked for MRI/CT Scan and an O2 prescription ! We'll see if they get back to me today! Take care everyone and have a CH free day! Jeff
  21. Rod Hey, thanks for the welcome! U of I grad here, Wife is an ISU alum. Just getting used to navigating around the site and welcome the vast amount of info here! I actually live just north of Iowa City in the country outside of Solon and Lake MacBride. Have a great day and thanks again Jeff
  22. Spiney You are correct my Verap is not EX or ER. I've been taking mine at 6AM, 1PM and 9PM. Adjustments to when I take them would no doubt help. Thanks No, I'm not on Pred now. Took 40mg/day from June 14-June 19 2019. Helped a bit, high anxiety level too. Jeff
  23. Moxie Thank you for the information, I know exactly what you are speaking of. Esp. about exiting planet earth! Just crawled out of a dark walk in closet armed with my now luke warm ice packs! So glad to hear you've found the help you needed, I'm jealous. But I strongly feel my time will come soon too. I always give my doctors the benefit of the doubt to begin with, but have struck out on an occasion with a few. Bedside manner, eye contact, education, expertise all play a major role along with a vast of other criteria. Recently had an appointment with a practitioner in cardiology and he didn't ever make eye contact nor listen to what I had to say. His 3 strikes all came on my initial visit. I've started a list all ready of questions/suggestions for the neurology dept. here in Iowa City. Really don't want to wait till my next appt. in 10 days, so I'll make a phone call on Monday. Forum and responses I have received here have helped me immensely. As usual it's a hot 92 degrees in Iowa today and quite humid! Don't you just miss it? LOL Thanks again Jeff
  24. CHFather, Look a likes? New to me! Thank you! My symptoms very but I generally get a visit from the beast in the early morning from 2AM-9AM. The pain is sometimes tolerable without sumatriptin (25mg). I'll first start off with using a netty pot with warm saline solution (I always have one nostril completely blocked), my next step is a warm shower followed by lying on a cool floor in a dark spot with Ice Packs. Normally after 30-45 minutes I start to feel relief. Pain levels vary from what feels like a sinus headache to a stabbing pain in either my left or right temple. I am keeping a log for myself and my professional to study. Generally I get hit in the mornings 2-4 times, then nothing until later in the day. I also found that almost immediately after eating dinner an episode would begin. Painlevels very on a scale of 1-10. Anything around 3 is tolerable, but when it climax's above that closer to 7 or 8, the fun to battle it starts. I quit drinking any alcohol for over a month now, because it with out a doubt would trigger a CH. This past week I discovered that natural stevia extract was also an instigator. Slowly learning as I go along here and again I appreciate all the inforrmation. Jeff
  25. Thank you so much for all the information. Its truly over whelming the information everyone has provided. I all like to hear positive feedback. The clinic I go to and the professional I am currently seeing (just one initial visit and a couple phone calls to discuss my progress) specializes in headache research so I'm under her care for now. On my next visit I will mention the auto injector (imitrex) and a scan of the noggin! She has all ready discussed O2 being the next step. Yep. Your doctor isn't very good. Everyone is in titled the their own opinion I guess. Just doing as I am told by a professional in the field and the discussions I have had with her made me feel quite comfortable. Jeff
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