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Supporter's Corner >> Supporter's Corner >> Please, I need your help! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1528571337 Message started by Mariana on Jun 9th, 2018 at 3:08pm |
Title: Please, I need your help! Post by Mariana on Jun 9th, 2018 at 3:08pm
Hi,
My name is Mariana and my husband Dave has been suffering of CH for the last 3 years. We didn’t know what was happening until recently ( about a year ago). I don’t know and he doesn’t know what to do. We live 45 min south of Boston, MA. And he’s been seeing a neurologist in Mass general. He’s taken all sorts of medications, the only one that seemed to make him feel less bad has been verapamil until recently. We ve tried psylosiblin mushrooms for the last 4 days with initial postive results as the headaches seemed to decrease in their intensity (He has 6 episodes a day aproximately that last about 90 min each) but they stopped working completely. Ever since the CH started he has accompanied his medication with 2 Advils each time and those were the only ones that stopped the episodes for a while. Today, Advil is NOT working. I’ve read some posts from Batch about the vitamin D deficiency so I ordered a vitamin D test to take from home. His doctor doesn’t answer and he just looks awful. He looks exhausted, depressed and he literally can’t do anything. Please, I’d like to learn more about vitamin D dosing, or about the mushroom treatment ( we’ve done it in a very unorganized way) or about the oxygen treatment ( he tried it once and didn’t seem to help either). Please please please I feel and he feels lost and worried. He said to me that he doesn’t want to live like this anymore. I’m desperate. |
Title: Re: Please, I need your help! Post by Sean McE on Jun 9th, 2018 at 4:04pm
I've sent you a PM, log in to read it.
Sean |
Title: Re: Please, I need your help! Post by Mariana on Jun 9th, 2018 at 10:21pm
Peter,
Thank you for your message. I will start reading. Let’s see how tonight goes... M |
Title: Re: Please, I need your help! Post by maz on Jun 10th, 2018 at 4:01am
Hi Mariana
Firstly, I must agree with all the other replys. Get the whole D3 regime sorted out for long term relief. But in the meantime, Imitrex is the best abortive for most people. Don't bother with the pills - they take too long to get into your system, but the auto injectors are fantastic and will kill off the worst CH in 7 - 10 mins. You can only use 2 injections per day and they are expensive, so most peoples first line of defence is oxygen therapy, which is also excellent. BUT, only if you use it correctly. You need a flow rate of at least 15 litres per minute, and a non rebreather mask. Get either of those wrong and it won't work. These are basic standard treatments for CH and for the most part they work extremely well, so I would also suggest seeing a different neurologist too - the one you have doesn't seem to be offering the right things. Let us know how you get on. |
Title: Re: Please, I need your help! Post by Mariana on Jun 10th, 2018 at 11:19pm
Thanks everyone.
David is on 375 mg of verapamil a day. He tried the monster cold drink today and he said the only thing he noticed was that he didn’t feel as his eyes were closing as much or as tired but the pain was still there. For injections, oxygen and vitamin D he requires prescriptions correct? |
Title: Re: Please, I need your help! Post by Mike NZ on Jun 11th, 2018 at 2:55am
Good on the Monster helping a bit. Ask him to try a room temperature one instead of being ice cold.
Mariana wrote on Jun 10th, 2018 at 11:19pm:
Injections will need a prescription. Medical oxygen needs one, but people have also used welding oxygen which doesn't need one. D3 doesn't need one, so you can just order it plus the other co-factors from online vendors like iherb.com. |
Title: Re: Please, I need your help! Post by Anthony A on Apr 4th, 2019 at 11:20am
Really valuable information in all the previous posts. I think i'm through my last cycle (crossing fingers) but it lasted 3.5 months. I think what really helped stop the cycle was a depo-medrol shot (not sure how much), 2 SPG blocks a week apart, and changing my verapamil from 240 extended release to 2x 120 rapid release. It very well could have been my cycle naturally ending so things were less intense but, the relief was pretty immediate. I'm also on the d3 regimen (400mg of magnesium oxide in AM and magnesium glycinate in the PM) plus c0q10 and 10mg of melatonin before bed.
For aborting, 02 at 15-25 lpm has been amazing and I wish I had it earlier. I also newly have zomig nasal spray and sumatriptan injections. Thankfully, I haven't needed to use the nasal spray or injections because I got them towards end of my cycle. Before that, I only had sumatriptan pills...for 13 years and those do not work fast enough. Good luck to your husband! |
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